TY 2022 Form 990

(A) Name and title	(B) Average hours per week (list any hours for related organizations below dotted line)	(C) Position (do not check more than one box, unless person is both an officer and a director/trustee)	(E) Reportable compensation from related organizations (W-2/1099-MISC/1099-NEC)
(1) DEBORAH YOBS...................................................................... PRESIDENT/EX	40.00 .................		X	111,457
(2) BRIAN APPLEBY...................................................................... BOARD MEMBER	2.00 .................	X		0
(3) TREVOR BAIERL...................................................................... BOARD MEMBER	2.00 .................	X		0
(4) PAMELA FEAR...................................................................... BOARD MEMBER	2.00 .................	X		0
(5) LAVONNE HALL...................................................................... BOARD MEMBER	2.00 .................	X		0
(6) CLARENCE HUNTER...................................................................... BOARD MEMBER	2.00 .................	X		0
(7) AMANDA BAXLEY KALINSKY...................................................................... BOARD MEMBER	2.00 .................	X		0
(8) JANINE KOCK...................................................................... BOARD MEMBER	2.00 .................	X		0
(9) JAY LEVY...................................................................... BOARD MEMBER	2.00 .................	X		0
(10) MAYRA LICHTER...................................................................... CHAIRMAN	2.00 .................	X	X	0
(11) PATRICIA MCGILL...................................................................... SECRETARY	2.00 .................	X	X	0
(12) BREANDA MEANEY...................................................................... BOARD MEMBER	2.00 .................	X		0
(13) DAVE MORRIS...................................................................... BOARD MEMBER	2.00 .................	X		0
(14) MOLLY NOCERINO...................................................................... BOARD MEMBER	2.00 .................	X		0
(15) JOE POHL...................................................................... BOARD MEMBER	2.00 .................	X		0
(16) TIM SCHWISTER...................................................................... BOARD MEMBER	2.00 .................	X		0
(17) DEANA SIMPSON...................................................................... BOARD MEMBER	2.00 .................	X		0

- TIN:

SCHEDULE A
(Form 990)

Department of the Treasury
Internal Revenue Service

Public Charity Status and Public Support

Complete if the organization is a section 501(c)(3) organization or a section 4947(a)(1) nonexempt charitable trust.
right arrow

Attach to Form 990 or Form 990-EZ.
right arrow

Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047

2022

Open to Public
Inspection

Name of the organization

CREUTZFELDT-JAKOB DISEASE
FOUNDATION INC

Employer identification number

65-0404623

Part I

Reason for Public Charity Status (All organizations must complete this part.) See instructions.

The organization is not a private foundation because it is: (For lines 1 through 12, check only one box.)

A church, convention of churches, or association of churches described in section 170(b)(1)(A)(i).

A school described in section 170(b)(1)(A)(ii). (Attach Schedule E (Form 990).)

A hospital or a cooperative hospital service organization described in section 170(b)(1)(A)(iii).

A medical research organization operated in conjunction with a hospital described in section 170(b)(1)(A)(iii). Enter the hospital's name, city, and state:

An organization operated for the benefit of a college or university owned or operated by a governmental unit described in section 170(b)(1)(A)(iv). (Complete Part II.)

A federal, state, or local government or governmental unit described in section 170(b)(1)(A)(v).

An organization that normally receives a substantial part of its support from a governmental unit or from the general public described in section 170(b)(1)(A)(vi). (Complete Part II.)

A community trust described in section 170(b)(1)(A)(vi). (Complete Part II.)

An agricultural research organization described in 170(b)(1)(A)(ix) operated in conjunction with a land-grant college or university or a non-land grant college of agriculture. See instructions. Enter the name, city, and state of the college or university:

An organization that normally receives: (1) more than 33 1/3% of its support from contributions, membership fees, and gross receipts from activities related to its exempt functions—subject to certain exceptions, and (2) no more than 33 1/3% of its support from gross investment income and unrelated business taxable income (less section 511 tax) from businesses acquired by the organization after June 30, 1975. See section 509(a)(2). (Complete Part III.)

An organization organized and operated exclusively to test for public safety. See section 509(a)(4).

An organization organized and operated exclusively for the benefit of, to perform the functions of, or to carry out the purposes of one or more publicly supported organizations described in section 509(a)(1) or section 509(a)(2). See section 509(a)(3). Check the box on lines 12a through 12d that describes the type of supporting organization and complete lines 12e, 12f, and 12g.

Type I. A supporting organization operated, supervised, or controlled by its supported organization(s), typically by giving the supported organization(s) the power to regularly appoint or elect a majority of the directors or trustees of the supporting organization. You must complete Part IV, Sections A and B.

Type II. A supporting organization supervised or controlled in connection with its supported organization(s), by having control or management of the supporting organization vested in the same persons that control or manage the supported organization(s). You must complete Part IV, Sections A and C.

Type III functionally integrated. A supporting organization operated in connection with, and functionally integrated with, its supported organization(s) (see instructions). You must complete Part IV, Sections A, D, and E.

Type III non-functionally integrated. A supporting organization operated in connection with its supported organization(s) that is not functionally integrated. The organization generally must satisfy a distribution requirement and an attentiveness requirement (see instructions). You must complete Part IV, Sections A and D, and Part V.

Check this box if the organization received a written determination from the IRS that it is a Type I, Type II, Type III functionally integrated, or Type III non-functionally integrated supporting organization.

Enter the number of supported organizations ...............................

Provide the following information about the supported organization(s).

(i) Name of supported organization	(ii) EIN	(iv) Is the organization listed in your governing document?		(v) Amount of monetary support (see instructions)	(vi) Amount of other support (see instructions)
(i) Name of supported organization	(ii) EIN	Yes	No	(v) Amount of monetary support (see instructions)	(vi) Amount of other support (see instructions)


Total

For Paperwork Reduction Act Notice, see the Instructions for
Form 990 or 990-EZ.

Cat. No. 11285F

Schedule A (Form 990) 2022

Page 2

Part II

Support Schedule for Organizations Described in Sections 170(b)(1)(A)(iv) and 170(b)(1)(A)(vi)
(Complete only if you checked the box on line 5, 7, or 8 of Part I or if the organization failed to qualify under Part III. If the organization failed to qualify under the tests listed below, please complete Part III.)

Section A. Public Support

Calendar year (or fiscal year beginning in)		(a) 2018	(b) 2019	(c) 2020	(d) 2021	(e) 2022	(f) Total
1	Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grant.") ..	1,511,893	1,552,666	1,732,905	2,482,682	2,735,803	10,015,949
2	Tax revenues levied for the organization's benefit and either paid to or expended on its behalf....
3	The value of services or facilities furnished by a governmental unit to the organization without charge..
4	Total. Add lines 1 through 3	1,511,893	1,552,666	1,732,905	2,482,682	2,735,803	10,015,949
5	The portion of total contributions by each person (other than a governmental unit or publicly supported organization) included on line 1 that exceeds 2% of the amount shown on line 11, column (f) ..
6	Public support. Subtract line 5 from line 4.						10,015,949

Section B. Total Support

Calendar year (or fiscal year beginning in)		(a) 2018	(b) 2019	(c) 2020	(d) 2021	(e) 2022	(f) Total
7	Amounts from line 4..	1,511,893	1,552,666	1,732,905	2,482,682	2,735,803	10,015,949
8	Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources...	7,808	16,398	22,028	37,997	83,547	167,778
9	Net income from unrelated business activities, whether or not the business is regularly carried on..	51,818	41,225	165	10,270	88,001	191,479
10	Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.)..
11	Total support. Add lines 7 through 10						10,375,206

Gross receipts from related activities, etc. (see instructions) ..................

134,589

First 5 years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization, check this box and stop here ........................................ right arrow

Section C. Computation of Public Support Percentage

Public support percentage for 2022 (line 6, column (f) divided by line 11, column (f)) .........

96.540 %

Public support percentage for 2020 Schedule A, Part II, line 14 ...............

95.770 %

16a

33 1/3% support test—2022. If the organization did not check the box on line 13, and line 14 is 33 1/3% or more, check this box
and stop here. The organization qualifies as a publicly supported organization ....................... right arrow

33 1/3% support test—2021. If the organization did not check a box on line 13 or 16a, and line 15 is 33 1/3% or more, check this
box and stop here. The organization qualifies as a publicly supported organization ..................... right arrow

17a

10%-facts-and-circumstances test—2022. If the organization did not check a box on line 13, 16a, or 16b, and line 14 is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here. Explain in Part VI how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly supported organization ............ right arrow

10%-facts-and-circumstances test—2021. If the organization did not check a box on line 13, 16a, 16b, or 17a, and line 15 is 10% or more, and if the organization meets the "facts-and-circumstances" test, check this box and stop here. Explain in Part VI how the organization meets the "facts-and-circumstances" test. The organization qualifies as a publicly supported organization ............ right arrow

Private foundation. If the organization did not check a box on line 13, 16a, 16b, 17a, or 17b, check this box and see
instructions ..................................................... right arrow

Schedule A (Form 990) 2022

Page 3

Part III

Support Schedule for Organizations Described in Section 509(a)(2)
(Complete only if you checked the box on line 10 of Part I or if the organization failed to qualify under Part II. If the organization fails to qualify under the tests listed below, please complete Part II.)

Section A. Public Support

Calendar year (or fiscal year beginning in)		(a) 2018	(b) 2019	(c) 2020	(d) 2021	(e) 2022	(f) Total
1	Gifts, grants, contributions, and membership fees received. (Do not include any "unusual grants.") .
2	Gross receipts from admissions, merchandise sold or services performed, or facilities furnished in any activity that is related to the organization's tax-exempt purpose
3	Gross receipts from activities that are not an unrelated trade or business under section 513 .....
4	Tax revenues levied for the organization's benefit and either paid to or expended on its behalf...
5	The value of services or facilities furnished by a governmental unit to the organization without charge
6	Total. Add lines 1 through 5
7a	Amounts included on lines 1, 2, and 3 received from disqualified persons
b	Amounts included on lines 2 and 3 received from other than disqualified persons that exceed the greater of $5,000 or 1% of the amount on line 13 for the year.
c	Add lines 7a and 7b..
8	Public support. (Subtract line 7c from line 6.)

Section B. Total Support

Calendar year (or fiscal year beginning in)		(a) 2018	(b) 2019	(c) 2020	(d) 2021	(e) 2022	(f) Total
9	Amounts from line 6...
10a	Gross income from interest, dividends, payments received on securities loans, rents, royalties and income from similar sources..
b	Unrelated business taxable income (less section 511 taxes) from businesses acquired after June 30, 1975.
c	Add lines 10a and 10b.
11	Net income from unrelated business activities not included on line 10b, whether or not the business is regularly carried on.
12	Other income. Do not include gain or loss from the sale of capital assets (Explain in Part VI.) ..
13	Total support. (Add lines 9, 10c, 11, and 12.)..

First 5 years. If the Form 990 is for the organization's first, second, third, fourth, or fifth tax year as a section 501(c)(3) organization, check this box and stop here................................................. right arrow

Section C. Computation of Public Support Percentage

Public support percentage for 2022 (line 8, column (f) divided by line 13, column (f)) .........

Public support percentage from 2021 Schedule A, Part III, line 15 ...............

Section D. Computation of Investment Income Percentage

Investment income percentage for 2022 (line 10c, column (f) divided by line 13, column (f)) ......

Investment income percentage from 2021 Schedule A, Part III, line 17 .............

19a

33 1/3% support tests-2022. If the organization did not check the box on line 14, and line 15 is more than 33 1/3%, and line 17 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization ....... right arrow

33 1/3% support tests—2021. If the organization did not check a box on line 14 or line 19a, and line 16 is more than 33 1/3% and line 18 is not more than 33 1/3%, check this box and stop here. The organization qualifies as a publicly supported organization ..... right arrow

Private foundation. If the organization did not check a box on line 14, 19a, or 19b, check this box and see instructions .... right arrow

Schedule A (Form 990) 2022

Page 4

Part IV

Supporting Organizations

(Complete only if you checked a box on line 12 of Part I. If you checked box 12a, of Part I, complete Sections A and B. If you checked box 12b, of Part I, complete Sections A and C. If you checked box 12c, of Part I, complete Sections A, D, and E. If you checked box12d, of Part I, complete Sections A and D, and complete Part V.)

Section A. All Supporting Organizations

Yes

Are all of the organization’s supported organizations listed by name in the organization’s governing documents?
If "No," describe in Part VI how the supported organizations are designated. If designated by class or purpose,
describe the designation. If historic and continuing relationship, explain.

Did the organization have any supported organization that does not have an IRS determination of status under section 509(a)(1) or (2)? If "Yes," explain in Part VI how the organization determined that the supported organization was described in section 509(a)(1) or (2).

Did the organization have a supported organization described in section 501(c)(4), (5), or (6)? If "Yes," answer lines 3b and 3c below.

Did the organization confirm that each supported organization qualified under section 501(c)(4), (5), or (6) and satisfied the public support tests under section 509(a)(2)? If "Yes," describe in Part VI when and how the organization made the determination.

Did the organization ensure that all support to such organizations was used exclusively for section 170(c)(2)(B) purposes? If "Yes," explain in Part VI what controls the organization put in place to ensure such use.

Was any supported organization not organized in the United States ("foreign supported organization")? If “Yes” and if you checked box 12a or 12b in Part I, answer lines 4b and 4c below.

Did the organization have ultimate control and discretion in deciding whether to make grants to the foreign supported organization? If “Yes,” describe in Part VI how the organization had such control and discretion despite being controlled or supervised by or in connection with its supported organizations.

Did the organization support any foreign supported organization that does not have an IRS determination under sections 501(c)(3) and 509(a)(1) or (2)? If “Yes,” explain in Part VI what controls the organization used to ensure that all support to the foreign supported organization was used exclusively for section 170(c)(2)(B) purposes.

Did the organization add, substitute, or remove any supported organizations during the tax year? If “Yes,” answer lines 5b and 5c below (if applicable). Also, provide detail in Part VI, including (i) the names and EIN numbers of the supported organizations added, substituted, or removed; (ii) the reasons for each such action; (iii) the authority under the organization's organizing document authorizing such action; and (iv) how the action was accomplished (such as by amendment to the organizing document).

Type I or Type II only. Was any added or substituted supported organization part of a class already designated in the organization's organizing document?

Substitutions only. Was the substitution the result of an event beyond the organization's control?

Did the organization provide support (whether in the form of grants or the provision of services or facilities) to anyone other than (i) its supported organizations, (ii) individuals that are part of the charitable class benefited by one or more of its supported organizations, or (iii) other supporting organizations that also support or benefit one or more of the filing organization’s supported organizations? If “Yes,” provide detail in Part VI.

Did the organization provide a grant, loan, compensation, or other similar payment to a substantial contributor (defined in section 4958(c)(3)(C)), a family member of a substantial contributor, or a 35% controlled entity with regard to a substantial contributor? If “Yes,” complete Part I of Schedule L (Form 990) .

Did the organization make a loan to a disqualified person (as defined in section 4958) not described on line 7? If “Yes,” complete Part I of Schedule L (Form 990).

Was the organization controlled directly or indirectly at any time during the tax year by one or more disqualified persons, as defined in section 4946 (other than foundation managers and organizations described in section 509(a)(1) or (2))? If “Yes,” provide detail in Part VI.

Did one or more disqualified persons (as defined on line 9a) hold a controlling interest in any entity in which the supporting organization had an interest? If “Yes,” provide detail in Part VI.

Did a disqualified person (as defined on line 9a) have an ownership interest in, or derive any personal benefit from, assets in which the supporting organization also had an interest? If “Yes,” provide detail in Part VI.

10a

Was the organization subject to the excess business holdings rules of section 4943 because of section 4943(f) (regarding certain Type II supporting organizations, and all Type III non-functionally integrated supporting organizations)? If “Yes,” answer line 10b below.

10a

Did the organization have any excess business holdings in the tax year? (Use Schedule C, Form 4720, to determine whether the organization had excess business holdings).

10b

Schedule A (Form 990) 2022

Page 5

Part IV

Supporting Organizations (continued)

Yes

Has the organization accepted a gift or contribution from any of the following persons?

A person who directly or indirectly controls, either alone or together with persons described on lines 11b and 11c below, the governing body of a supported organization?

11a

A family member of a person described on 11a above?

11b

A 35% controlled entity of a person described on line 11a or 11b above? If “Yes” to 11a, 11b, or 11c, provide detail in Part VI.

11c

Section B. Type I Supporting Organizations

Yes

Did the officers, directors, trustees, or membership of one or more supported organizations have the power to regularly appoint or elect at least a majority of the organization’s directors or trustees at all times during the tax year? If “No,” describe in Part VI how the supported organization(s) effectively operated, supervised, or controlled the organization’s activities. If the organization had more than one supported organization, describe how the powers to appoint and/or remove directors or trustees were allocated among the supported organizations and what conditions or restrictions, if any, applied to such powers during the tax year.

Did the organization operate for the benefit of any supported organization other than the supported organization(s) that operated, supervised, or controlled the supporting organization? If “Yes,” explain in Part VI how providing such benefit carried out the purposes of the supported organization(s) that operated, supervised or controlled the supporting organization.

Section C. Type II Supporting Organizations

Yes

Were a majority of the organization’s directors or trustees during the tax year also a majority of the directors or trustees of each of the organization’s supported organization(s)? If “No,” describe in Part VI how control or management of the supporting organization was vested in the same persons that controlled or managed the supported organization(s).

Section D. All Type III Supporting Organizations

Yes

Did the organization provide to each of its supported organizations, by the last day of the fifth month of the organization’s tax year, (i) a written notice describing the type and amount of support provided during the prior tax year, (ii) a copy of the Form 990 that was most recently filed as of the date of notification, and (iii) copies of the organization’s governing documents in effect on the date of notification, to the extent not previously provided?

Were any of the organization’s officers, directors, or trustees either (i) appointed or elected by the supported organization(s) or (ii) serving on the governing body of a supported organization? If "No," explain in Part VI how the organization maintained a close and continuous working relationship with the supported organization(s).

By reason of the relationship described in line 2 above, did the organization’s supported organizations have a significant voice in the organization’s investment policies and in directing the use of the organization’s income or assets at all times during the tax year? If "Yes," describe in Part VI the role the organization’s supported organizations played in this regard.

Section E. Type III Functionally-Integrated Supporting Organizations

Check the box next to the method that the organization used to satisfy the Integral Part Test during the year (see instructions):

The organization satisfied the Activities Test. Complete line 2 below.

The organization is the parent of each of its supported organizations. Complete line 3 below.

The organization supported a governmental entity. Describe in Part VI how you supported a government entity (see instructions)

Activities Test. Answer lines 2a and 2b below.

Yes

Did substantially all of the organization’s activities during the tax year directly further the exempt purposes of the supported organization(s) to which the organization was responsive? If "Yes," then in Part VI identify those supported organizations and explain how these activities directly furthered their exempt purposes, how the organization was responsive to those supported organizations, and how the organization determined that these activities constituted substantially all of its activities.

Did the activities described on line 2a, above constitute activities that, but for the organization’s involvement, one or more of the organization’s supported organization(s) would have been engaged in? If "Yes," explain in Part VI the reasons for the organization’s position that its supported organization(s) would have engaged in these activities but for the organization’s involvement.

Parent of Supported Organizations. Answer lines 3a and 3b below.

Did the organization have the power to regularly appoint or elect a majority of the officers, directors, or trustees of each of the supported organizations?If "Yes" or "No", provide details in Part VI.

Did the organization exercise a substantial degree of direction over the policies, programs and activities of each of its supported organizations? If "Yes," describe in Part VI. the role played by the organization in this regard.

Schedule A (Form 990) 2022

Page 6

Part V

Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations

Check here if the organization satisfied the Integral Part Test as a qualifying trust on Nov. 20, 1970 (explain in Part VI). See instructions. All other Type III non-functionally integrated supporting organizations must complete Sections A through E.

	Section A - Adjusted Net Income		(A) Prior Year	(B) Current Year (optional)
1	Net short-term capital gain	1
2	Recoveries of prior-year distributions	2
3	Other gross income (see instructions)	3
4	Add lines 1 through 3	4
5	Depreciation and depletion	5
6	Portion of operating expenses paid or incurred for production or collection of gross income or for management, conservation, or maintenance of property held for production of income (see instructions)	6
7	Other expenses (see instructions)	7
8	Adjusted Net Income (subtract lines 5, 6 and 7 from line 4)	8

	Section B - Minimum Asset Amount		(A) Prior Year	(B) Current Year (optional)
1	Aggregate fair market value of all non-exempt-use assets (see instructions for short tax year or assets held for part of year):	1
a	Average monthly value of securities	1a
b	Average monthly cash balances	1b
c	Fair market value of other non-exempt-use assets	1c
d	Total (add lines 1a, 1b, and 1c)	1d
e	Discount claimed for blockage or other factors (explain in detail in Part VI):
2	Acquisition indebtedness applicable to non-exempt use assets	2
3	Subtract line 2 from line 1d	3
4	Cash deemed held for exempt use. Enter 0.015 of line 3 (for greater amount, see instructions).	4
5	Net value of non-exempt-use assets (subtract line 4 from line 3)	5
6	Multiply line 5 by 0.035	6
7	Recoveries of prior-year distributions	7
8	Minimum Asset Amount (add line 7 to line 6)	8

	Section C - Distributable Amount		Current Year
1	Adjusted net income for prior year (from Section A, line 8, Column A)	1
2	Enter 85% of line 1	2
3	Minimum asset amount for prior year (from Section B, line 8, Column A)	3
4	Enter greater of line 2 or line 3	4
5	Income tax imposed in prior year	5
6	Distributable Amount. Subtract line 5 from line 4, unless subject to emergency temporary reduction (see instructions)	6

Check here if the current year is the organization's first as a non-functionally-integrated Type III supporting organization (see instructions)

Schedule A (Form 990) 2022

Page 7

Part V

Type III Non-Functionally Integrated 509(a)(3) Supporting Organizations(continued)

Section D - Distributions		Current Year
1 Amounts paid to supported organizations to accomplish exempt purposes	1
2 Amounts paid to perform activity that directly furthers exempt purposes of supported organizations, in excess of income from activity	2
3 Administrative expenses paid to accomplish exempt purposes of supported organizations	3
4 Amounts paid to acquire exempt-use assets	4
5 Qualified set-aside amounts (prior IRS approval required - provide details in Part VI)	5
6 Other distributions (describe in Part VI). See instructions	6
7Total annual distributions. Add lines 1 through 6.	7
8 Distributions to attentive supported organizations to which the organization is responsive (provide details in Part VI). See instructions	8
9 Distributable amount for 2022 from Section C, line 6	9
10 Line 8 amount divided by Line 9 amount	10

Section E - Distribution Allocations (see instructions)		(i) Excess Distributions	(ii) Underdistributions Pre-2022	(iii) Distributable Amount for 2022
1 Distributable amount for 2022 from Section C, line 6
2 Underdistributions, if any, for years prior to 2022 (reasonable cause required-- explain in Part VI). See instructions.
3 Excess distributions carryover, if any, to 2022:
a From 2017.......
b From 2018.......
c From 2019.......
d From 2020.......
e From 2021.......
fTotal of lines 3a through e
g Applied to underdistributions of prior years
h Applied to 2022 distributable amount
i Carryover from 2017 not applied (see instructions)
j Remainder. Subtract lines 3g, 3h, and 3i from line 3f.
4Distributions for 2022 from Section D, line 7:
$
a Applied to underdistributions of prior years
b Applied to 2022 distributable amount
c Remainder. Subtract lines 4a and 4b from line 4.
5 Remaining underdistributions for years prior to 2022, if any. Subtract lines 3g and 4a from line 2. If the amount is greater than zero, explain in Part VI. See instructions.
6 Remaining underdistributions for 2022. Subtract lines 3h and 4b from line 1. If the amount is greater than zero, explain in Part VI. See instructions.
7 Excess distributions carryover to 2023. Add lines 3j and 4c.
8 Breakdown of line 7:
a Excess from 2018.....
b Excess from 2019.....
c Excess from 2020.....
d Excess from 2021.....
e Excess from 2022.....

Schedule A (Form 990) (2022)

Schedule A (Form 990) 2022

Page 8

Part VI

Supplemental Information. Provide the explanations required by Part II, line 10; Part II, line 17a or 17b; Part III, line 12; Part IV, Section A, lines 1, 2, 3b, 3c, 4b, 4c, 5a, 6, 9a, 9b, 9c, 11a, 11b, and 11c; Part IV, Section B, lines 1 and 2; Part IV, Section C, line 1; Part IV, Section D, lines 2 and 3; Part IV, Section E, lines 1c, 2a, 2b, 3a and 3b; Part V, line 1; Part V, Section B, line 1e; Part V Section D, lines 5, 6, and 8; and Part V, Section E, lines 2, 5, and 6. Also complete this part for any additional information. (See instructions).

Facts And Circumstances Test

Return Reference	Explanation
PART II, LINE 10	VARIOUS 0

Schedule A (Form 990) 2022

Additional Data

Software ID:
Software Version:

- TIN:

Schedule B
(Form 990)

Department of the Treasury
Internal Revenue Service

Schedule of Contributors

Attach to Form 990, 990-EZ, or 990-PF.

Go to www.irs.gov/Form990 for the latest information.

OMB No. 1545-0047

2022

Name of the organization

CREUTZFELDT-JAKOB DISEASE
FOUNDATION INC

Employer identification number

65-0404623

Organization type (check one):

Filers of:

Section:

Form 990 or 990-EZ

501(c)( ) (enter number) organization

4947(a)(1) nonexempt charitable trust not treated as a private foundation

527 political organization

Form 990-PF

501(c)(3) exempt private foundation

4947(a)(1) nonexempt charitable trust treated as a private foundation

501(c)(3) taxable private foundation

Check if your organization is covered by the General Rule or a Special Rule.
Note: Only a section 501(c)(7), (8), or (10) organization can check boxes for both the General Rule and a Special Rule. See instructions.

General Rule

For an organization filing Form 990, 990-EZ, or 990-PF that received, during the year, contributions totaling $5,000 or more (in money or other property) from any one contributor. Complete Parts I and II. See instructions for determining a contributor's total contributions.

Special Rules

For an organization described in section 501(c)(3) filing Form 990 or 990-EZ that met the 33¹/3% support test of the regulations
under sections 509(a)(1) and 170(b)(1)(A)(vi), that checked Schedule A (Form 990 or 990-EZ), Part II, line 13, 16a, or 16b, and that received from any one contributor, during the year, total contributions of the greater of (1) $5,000 or (2) 2% of the amount on (i) Form 990, Part VIII, line 1h, or (ii) Form 990-EZ, line 1. Complete Parts I and II.

For an organization described in section 501(c)(7), (8), or (10) filing Form 990 or 990-EZ that received from any one contributor,
during the year, total contributions of more than $1,000 exclusively for religious, charitable, scientific, literary, or educational purposes, or for the prevention of cruelty to children or animals. Complete Parts I, II, and III.

For an organization described in section 501(c)(7), (8), or (10) filing Form 990 or 990-EZ that received from any one contributor,
during the year, contributions exclusively for religious, charitable, etc., purposes, but no such contributions totaled more than $1,000. If this box is checked, enter here the total contributions that were received during the year for an exclusively religious, charitable, etc., purpose. Don't complete any of the parts unless the General Rule applies to this organization because it received nonexclusively religious, charitable, etc., contributions totaling $5,000 or more during the year ......... Arrow Bullet

Caution: An organization that isn't covered by the General Rule and/or the Special Rules doesn't file Schedule B (Form 990,
990-EZ, or 990-PF), but it must answer “No” on Part IV, line 2, of its Form 990; or check the box on line H of its Form 990-EZ
or on its Form 990PF, Part I, line 2, to certify that it doesn't meet the filing requirements of Schedule B (Form 990,
990-EZ, or 990-PF).

For Paperwork Reduction Act Notice, see the Instructions
for Form 990, 990-EZ, or 990-PF.

Cat. No. 30613XSchedule B (Form 990) (2022)

Schedule B (Form 990) (2022) Page 2

Name of organization CREUTZFELDT-JAKOB DISEASE FOUNDATION INC

Part I Contributors	Contributors (see instructions). Use duplicate copies of Part I if additional space is needed.
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
RESTRICTED	,	$ RESTRICTED	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
(a) No.	(b) Name, address, and ZIP + 4	(c) Total contributions	(d) Type of contribution
		$	Person Payroll Noncash (Complete Part II for noncash contributions.)
Schedule B (Form 990) (2022)

Schedule B (Form 990) (2022)

Page 3

Name of organization CREUTZFELDT-JAKOB DISEASE FOUNDATION INC		Employer identification number 65-0404623

Part II	Noncash Property (see instructions). Use duplicate copies of Part II if additional space is needed.
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
(a) No. from Part I	(b) Description of noncash property given	(c) FMV (or estimate) (See instructions)	(d) Date received
		$
Schedule B (Form 990) (2022)

Schedule B (Form 990) (2022)

Page 4


Name of organization CREUTZFELDT-JAKOB DISEASE FOUNDATION INC			Employer identification number 65-0404623
Part III Exclusively religious, charitable, etc., contributions to organizations described in section 501(c)(7), (8), or (10) that total more than $1,000 for the year from any one contributor. Complete columns (a) through (e) and the following line entry. For organizations completing Part III, enter the total of exclusively religious, charitable, etc., contributions of $1,000 or less for the year. (Enter this information once. See instructions.) $ Use duplicate copies of Part III if additional space is needed.

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

(a)
No. from Part I

(b) Purpose of gift

(d) Description of how gift is held

(e) Transfer of gift
Transferee's name, address, and ZIP 4	Relationship of transferor to transferee

Schedule B (Form 990) (2022)

Additional Data

Software ID:
Software Version:

- TIN:

SCHEDULE C
(Form 990)

Department of the Treasury
Internal Revenue Service

Political Campaign and Lobbying Activities

For Organizations Exempt From Income Tax Under section 501(c) and section 527

SchCMd Bullet

Complete if the organization is described below. SchCMd Bullet

Attach to Form 990 or Form 990-EZ.
SchCMd Bullet

Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047

2021

Open to Public
Inspection

If the organization answered "Yes" on Form 990, Part IV, Line 3, or Form 990-EZ, Part V, line 46 (Political Campaign Activities), then
Round Bullet

Section 501(c)(3) organizations: Complete Parts I-A and B. Do not complete Part I-C.
Round Bullet

Section 501(c) (other than section 501(c)(3)) organizations: Complete Parts I-A and C below. Do not complete Part I-B.
Round Bullet

Section 527 organizations: Complete Part I-A only.
If the organization answered "Yes" on Form 990, Part IV, Line 4, or Form 990-EZ, Part VI, line 47 (Lobbying Activities), then
Round Bullet

Section 501(c)(3) organizations that have filed Form 5768 (election under section 501(h)): Complete Part II-A. Do not complete Part II-B.
Round Bullet

Section 501(c)(3) organizations that have NOT filed Form 5768 (election under section 501(h)): Complete Part II-B. Do not complete Part II-A.
If the organization answered "Yes" on Form 990, Part IV, Line 5 (Proxy Tax) (see separate instructions) or Form 990-EZ, Part V, line 35c (Proxy Tax) (see separate instructions), then
Round Bullet

Section 501(c)(4), (5), or (6) organizations: Complete Part III.

Name of the organization

CREUTZFELDT-JAKOB DISEASE
FOUNDATION INC

Employer identification number

65-0404623

Part I-A

Complete if the organization is exempt under section 501(c) or is a section 527 organization.

Provide a description of the organization’s direct and indirect political campaign activities in Part IV. See instructions for definition of “political campaign activities."

Political campaign activity expenditures. See instructions .................................................................... SchCMd Bullet

Volunteer hours for political campaign activities. See instructions ..................................................................

Part I-B

Complete if the organization is exempt under section 501(c)(3).

Enter the amount of any excise tax incurred by the organization under section 4955 ................................ SchCMd Bullet

Enter the amount of any excise tax incurred by organization managers under section 4955 ....................... SchCMd Bullet

If the organization incurred a section 4955 tax, did it file Form 4720 for this year? .........................................

Yes No

Was a correction made? ......................................................................................................................

Yes No

If "Yes," describe in Part IV.

Part I-C

Complete if the organization is exempt under section 501(c), except section 501(c)(3).

Enter the amount directly expended by the filing organization for section 527 exempt function activities ..... SchCMd Bullet

Enter the amount of the filing organization's funds contributed to other organizations for section 527 exempt function activities ............................................................................................................................ SchCMd Bullet

Total exempt function expenditures. Add lines 1 and 2. Enter here and on Form 1120-POL, line 17b........... SchCMd Bullet

Did the filing organization file Form 1120-POL for this year? ...................................................................

Yes No

Enter the names, addresses and employer identification number (EIN) of all section 527 political organizations to which the filing
organization made payments. For each organization listed, enter the amount paid from the filing organization’s funds. Also enter the amount of political contributions received that were promptly and directly delivered to a separate political organization, such as a separate segregated fund or a political action committee (PAC). If additional space is needed, provide information in Part IV.

(a) Name	(b) Address	(c) EIN	(d) Amount paid from filing organization's funds. If none, enter -0-.	(e) Amount of political contributions received and promptly and directly delivered to a separate political organization. If none, enter -0-.
1
2
3
4
5
6

For Paperwork Reduction Act Notice, see the instructions for Form 990.

Cat. No. 50084S

Schedule C (Form 990) 2021

Page 2

Part II-A

Complete if the organization is exempt under section 501(c)(3) and filed Form 5768 (election under section 501(h)).

A Check SchCMd Bullet

if the filing organization belongs to an affiliated group (and list in Part IV each affiliated group member's name, address, EIN, expenses, and share of excess lobbying expenditures).
B Check SchCMd Bullet

if the filing organization checked box A and "limited control" provisions apply.

Limits on Lobbying Expenditures (The term "expenditures" means amounts paid or incurred.)		(a) Filing organization's totals	(b) Affiliated group totals
1a	Total lobbying expenditures to influence public opinion (grass roots lobbying) ......................
b	Total lobbying expenditures to influence a legislative body (direct lobbying) ........................
c	Total lobbying expenditures (add lines 1a and 1b) ............................................................
d	Other exempt purpose expenditures ...............................................................................	1,303,105
e	Total exempt purpose expenditures (add lines 1c and 1d) ..................................................	1,303,105
f	Lobbying nontaxable amount. Enter the amount from the following table in both columns.	205,311
	If the amount on line 1e, column (a) or (b) is:The lobbying nontaxable amount is:
	Not over $500,00020% of the amount on line 1e.
	Over $500,000 but not over $1,000,000$100,000 plus 15% of the excess over $500,000.
	Over $1,000,000 but not over $1,500,000$175,000 plus 10% of the excess over $1,000,000.
	Over $1,500,000 but not over $17,000,000$225,000 plus 5% of the excess over $1,500,000.
	Over $17,000,000$1,000,000.

g	Grassroots nontaxable amount (enter 25% of line 1f) .................................................	51,328
h	Subtract line 1g from line 1a. If zero or less, enter -0-. ................................................
i	Subtract line 1f from line 1c. If zero or less, enter -0-. ................................................
j	If there is an amount other than zero on either line 1h or line 1i, did the organization file Form 4720 reporting section 4911 tax for this year? ...................................................................................................................		Yes No

4-Year Averaging Period Under Section 501(h) (Some organizations that made a section 501(h) election do not have to complete all of the five columns below. See the separate instructions for lines 2a through 2f.)
Lobbying Expenditures During 4-Year Averaging Period
	Calendar year (or fiscal year beginning in)	(a) 2018	(b) 2019	(c) 2020	(d) 2021	(e) Total

2a	Lobbying nontaxable amount	170,094	179,351	186,581	205,311	741,337

b	Lobbying ceiling amount (150% of line 2a, column(e))					1,112,006

c	Total lobbying expenditures	22,547	21,013	19,559		63,119

d	Grassroots nontaxable amount	42,524	44,838	46,645	51,328	185,335

e	Grassroots ceiling amount (150% of line 2d, column (e))					278,003

f	Grassroots lobbying expenditures

Schedule C (Form 990) 2021

Page 3

Part II-B

Complete if the organization is exempt under section 501(c)(3) and has NOT filed Form 5768 (election under section 501(h)).

For each "Yes" response on lines 1a through 1i below, provide in Part IV a detailed description of the lobbying activity.

(a)

Yes|No

(b)

Amount

During the year, did the filing organization attempt to influence foreign, national, state or local legislation, including any attempt to influence public opinion on a legislative matter or referendum, through the use of:

Volunteers? ...........................................................................................................

Paid staff or management (include compensation in expenses reported on lines 1c through 1i)? ........

Media advertisements? ...................................................................................................

Mailings to members, legislators, or the public? .............................................................................

Publications, or published or broadcast statements? ...........................................................

Grants to other organizations for lobbying purposes? ..........................................................

Direct contact with legislators, their staffs, government officials, or a legislative body? .......................

Rallies, demonstrations, seminars, conventions, speeches, lectures, or any similar means? ..................

Other activities? ...................................................................................................................

Total. Add lines 1c through 1i ....................................................................................................

Did the activities in line 1 cause the organization to be not described in section 501(c)(3)? .....

If "Yes," enter the amount of any tax incurred under section 4912 ...........................................

If "Yes," enter the amount of any tax incurred by organization managers under section 4912 ...................

If the filing organization incurred a section 4912 tax, did it file Form 4720 for this year? ........................

Part III-A

Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6).

Yes

Were substantially all (90% or more) dues received nondeductible by members? ...............................................

Did the organization make only in-house lobbying expenditures of $2,000 or less? ............................................

Did the organization agree to carry over lobbying and political expenditures from the prior year? .................................

Part III-B

Complete if the organization is exempt under section 501(c)(4), section 501(c)(5), or section 501(c)(6) and if either (a) BOTH Part III-A, lines 1 and 2, are answered "No" OR (b) Part III-A, line 3, is answered “Yes."

Dues, assessments and similar amounts from members ......................................................................

Section 162(e) nondeductible lobbying and political expenditures (do not include amounts of political expenses for which the section 527(f) tax was paid).

Current year .............................................................................................................................

Carryover from last year ............................................................................................................

Total ...........................................................................................................................................

Aggregate amount reported in section 6033(e)(1)(A) notices of nondeductible section 162(e) dues .

If notices were sent and the amount on line 2c exceeds the amount on line 3, what portion of the excess does the organization agree to carryover to the reasonable estimate of nondeductible lobbying and political expenditure next year? ......................................................................................................................

Taxable amount of lobbying and political expenditures. See Instructions .........................................

Part IV

Supplemental Information

Provide the descriptions required for Part l-A, line 1; Part l-B, line 4; Part l-C, line 5; Part II-A (affiliated group list); Part II-A, lines 1 and 2 (see instructions), and Part ll-B, line 1. Also, complete this part for any additional information.

Return Reference	Explanation
SCHEDULE C, PART II-A	ORGANIZATION MADE ITS 501(H) ELECTION IN 2019.

Schedule C (Form 990) 2021

Additional Data

Software ID:
Software Version:

- TIN:

SCHEDULE D
(Form 990)

Department of the Treasury
Internal Revenue Service

Supplemental Financial Statements

Complete if the organization answered "Yes," on Form 990,
Part IV, line 6, 7, 8, 9, 10, 11a, 11b, 11c, 11d, 11e, 11f, 12a, or 12b.
SchDMd Bullet

Attach to Form 990.
SchDMd Bullet

Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047

2021

Open to Public Inspection

Name of the organization

CREUTZFELDT-JAKOB DISEASE
FOUNDATION INC

Employer identification number

65-0404623

Part I

Organizations Maintaining Donor Advised Funds or Other Similar Funds or Accounts. Complete if the organization answered "Yes" on Form 990, Part IV, line 6.

		(a) Donor advised funds	(b) Funds and other accounts
1	Total number at end of year .........
2	Aggregate value of contributions to (during year)
3	Aggregate value of grants from (during year)
4	Aggregate value at end of year ........

Did the organization inform all donors and donor advisors in writing that the assets held in donor advised funds are the organization’s property, subject to the organization’s exclusive legal control? ............

Yes No

Did the organization inform all grantees, donors, and donor advisors in writing that grant funds can be used only for charitable purposes and not for the benefit of the donor or donor advisor, or for any other purpose conferring impermissible private benefit? ...................................

Yes No

Part II

Conservation Easements.
Complete if the organization answered "Yes" on Form 990, Part IV, line 7.

Purpose(s) of conservation easements held by the organization (check all that apply).

Preservation of land for public use (e.g., recreation or education) Preservation of an historically important land area

Protection of natural habitat Preservation of a certified historic structure

Preservation of open space

Complete lines 2a through 2d if the organization held a qualified conservation contribution in the form of a conservation easement on the last day of the tax year.


a	Total number of conservation easements ......................	2a
b	Total acreage restricted by conservation easements ....................	2b
c	Number of conservation easements on a certified historic structure included in (a) .....	2c
d	Number of conservation easements included in (c) acquired after 7/25/06, and not on a historic structure listed in the National Register ...	2d

Number of conservation easements modified, transferred, released, extinguished, or terminated by the organization during the
tax year SchDMd Bullet

Number of states where property subject to conservation easement is located SchDMd Bullet

Does the organization have a written policy regarding the periodic monitoring, inspection, handling of violations, and enforcement of the conservation easements it holds? ............

Yes No

Staff and volunteer hours devoted to monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
SchDMd Bullet

Amount of expenses incurred in monitoring, inspecting, handling of violations, and enforcing conservation easements during the year
SchDMd Bullet

Does each conservation easement reported on line 2(d) above satisfy the requirements of section 170(h)(4)(B)(i) and section 170(h)(4)(B)(ii)? .............................

Yes No

In Part XIII, describe how the organization reports conservation easements in its revenue and expense statement, and
balance sheet, and include, if applicable, the text of the footnote to the organization’s financial statements that describes
the organization’s accounting for conservation easements.

Part III

Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets.
Complete if the organization answered "Yes" on Form 990, Part IV, line 8.

If the organization elected, as permitted under FASB ASC 958, not to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide, in Part XIII, the text of the footnote to its financial statements that describes these items.

If the organization elected, as permitted under FASB ASC 958, to report in its revenue statement and balance sheet works of art, historical treasures, or other similar assets held for public exhibition, education, or research in furtherance of public service, provide the following amounts relating to these items:

(i)

Revenue included on Form 990, Part VIII, line 1 ......................... SchDMd Bullet

(ii)

Assets included in Form 990, Part X ............................... SchDMd Bullet

If the organization received or held works of art, historical treasures, or other similar assets for financial gain, provide the
following amounts required to be reported under FASB ASC 958 relating to these items:

Revenue included on Form 990, Part VIII, line 1 .......................... SchDMd Bullet

Assets included in Form 990, Part X ............................... SchDMd Bullet

For Paperwork Reduction Act Notice, see the Instructions for Form 990.

Cat. No. 52283D

Schedule D (Form 990) 2021

Page 2

Part III

Organizations Maintaining Collections of Art, Historical Treasures, or Other Similar Assets (continued)

Using the organization’s acquisition, accession, and other records, check any of the following that are a significant use of its collection items (check all that apply):

Public exhibition

Loan or exchange programs

Scholarly research

Other

Preservation for future generations

Provide a description of the organization’s collections and explain how they further the organization’s exempt purpose in
Part XIII.

During the year, did the organization solicit or receive donations of art, historical treasures or other similar
assets to be sold to raise funds rather than to be maintained as part of the organization’s collection?...

Yes No

Part IV

Escrow and Custodial Arrangements. Complete if the organization answered "Yes" on Form 990, Part IV, line 9, or reported an amount on Form 990, Part X, line 21.

Is the organization an agent, trustee, custodian or other intermediary for contributions or other assets not
included on Form 990, Part X? ....................................

Yes No


b	If "Yes," explain the arrangement in Part XIII and complete the following table:		Amount
c	Beginning balance .............................	1c
d	Additions during the year ............................	1d
e	Distributions during the year ..........................	1e
f	Ending balance ................................	1f

Did the organization include an amount on Form 990, Part X, line 21, for escrow or custodial account liability? ...

Yes No

If "Yes," explain the arrangement in Part XIII. Check here if the explanation has been provided in Part XIII ....

Part V

Endowment Funds.
Complete if the organization answered "Yes" on Form 990, Part IV, line 10.

		(a) Current year	(b) Prior year	(c) Two years back	(d) Three years back	(e) Four years back

1a	Beginning of year balance ....
b	Contributions ...
c	Net investment earnings, gains, and losses
d	Grants or scholarships ...
e	Other expenditures for facilities and programs ...
f	Administrative expenses ....
g	End of year balance ......

Provide the estimated percentage of the current year end balance (line 1g, column (a)) held as:

Board designated or quasi-endowment SchDMd Bullet

Permanent endowment SchDMd Bullet

Term endowment SchDMd Bullet

The percentages on lines 2a, 2b, and 2c should equal 100%.

Are there endowment funds not in the possession of the organization that are held and administered for the
organization by:

Yes

(i) Unrelated organizations .................

3a(i)

(ii) Related organizations .................

3a(ii)

If "Yes" on 3a(ii), are the related organizations listed as required on Schedule R? .........

Describe in Part XIII the intended uses of the organization's endowment funds.

Part VI

Land, Buildings, and Equipment.
Complete if the organization answered "Yes" on Form 990, Part IV, line 11a. See Form 990, Part X, line 10.

Description of property		(a) Cost or other basis (investment)	(b) Cost or other basis (other)	(c) Accumulated depreciation	(d) Book value

1a	Land .....
b	Buildings ....
c	Leasehold improvements
d	Equipment ....	43,660	36,893	6,767
e	Other .....	52,704		52,704
Total. Add lines 1a through 1e. (Column (d) must equal Form 990, Part X, column (B), line 10(c).)..				59,471

Schedule D (Form 990) 2021

Page 3

Part VII

Investments - Other Securities.
Complete if the organization answered "Yes" on Form 990, Part IV, line 11b. See Form 990, Part X, line 12.

(a) Description of security or category (including name of security)	(b) Book value	(c) Method of valuation: Cost or end-of-year market value
(1) Financial derivatives.........
(2) Closely-held equity interests........
(3)Other
(A)
(B)
(C)
(D)
(E)
(F)
(G)
(H)
Total. (Column (b) must equal Form 990, Part X, col. (B) line 12.)

Part VIII

Investments - Program Related. Complete if the organization answered 'Yes' on Form 990, Part IV, line 11c. See Form 990, Part X, line 13.

(a) Description of investment	(b) Book value	(c) Method of valuation: Cost or end-of-year market value

(1)
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 13.)

Part IX

Other Assets.
Complete if the organization answered 'Yes' on Form 990, Part IV, line 11d. See Form 990, Part X, line 15.

(a) Description				(b) Book value

(1)
(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 15.)...........

Part X

Other Liabilities.
Complete if the organization answered 'Yes' on Form 990, Part IV, line 11e or 11f. See Form 990, Part X, line 25.

1.(a) Description of liability	(b) Book value
(1) Federal income taxes

(2)
(3)
(4)
(5)
(6)
(7)
(8)
(9)
Total. (Column (b) must equal Form 990, Part X, col.(B) line 25.)
2. Liability for uncertain tax positions. In Part XIII, provide the text of the footnote to the organization's financial statements that reports the organization's liability for uncertain tax positions under FIN 48 (ASC 740). Check here if the text of the footnote has been provided in Part XIII

Schedule D (Form 990) 2021

Page 4

Part XI Reconciliation of Revenue per Audited Financial Statements With Revenue per Return. Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1	Total revenue, gains, and other support per audited financial statements .......			1	2,730,402
2	Amounts included on line 1 but not on Form 990, Part VIII, line 12:
a	Net unrealized gains (losses) on investments ....	2a	-193,090
b	Donated services and use of facilities .........	2b
c	Recoveries of prior year grants ...........	2c
d	Other (Describe in Part XIII.) ............	2d	61,575
e	Add lines 2a through 2d .....................			2e	-131,515
3	Subtract line 2e from line 1..................			3	2,861,917
4	Amounts included on Form 990, Part VIII, line 12, but not on line 1:
a	Investment expenses not included on Form 990, Part VIII, line 7b .	4a
b	Other (Describe in Part XIII.) ...........	4b
c	Add lines 4a and 4b....................			4c
5	Total revenue. Add lines 3 and 4c. (This must equal Form 990, Part I, line 12.) ......			5	2,861,917

Part XII Reconciliation of Expenses per Audited Financial Statements With Expenses per Return. Complete if the organization answered 'Yes' on Form 990, Part IV, line 12a.
1	Total expenses and losses per audited financial statements ...........			1	1,336,017
2	Amounts included on line 1 but not on Form 990, Part IX, line 25:
a	Donated services and use of facilities .........	2a
b	Prior year adjustments ............	2b
c	Other losses ................	2c
d	Other (Describe in Part XIII.) ............	2d	61,575
e	Add lines 2a through 2d....................			2e	61,575
3	Subtract line 2e from line 1...................			3	1,274,442
4	Amounts included on Form 990, Part IX, line 25, but not on line 1:
a	Investment expenses not included on Form 990, Part VIII, line 7b ..	4a
b	Other (Describe in Part XIII.) ............	4b
c	Add lines 4a and 4b.....................			4c
5	Total expenses. Add lines 3 and 4c. (This must equal Form 990, Part I, line 18.) ......			5	1,274,442

Part XIII

Supplemental Information

Provide the descriptions required for Part II, lines 3, 5, and 9; Part III, lines 1a and 4; Part lV, lines 1b and 2b; Part V, line 4; Part X, line 2; Part XI, lines 2d and 4b; and Part XII, lines 2d and 4b. Also complete this part to provide any additional information.

Return Reference	Explanation
SCHEDULE D, PAGE 3, PART X	THE PREPARATION OF FINANCIAL STATEMENTS IN CONFORMITY WITH ACCOUNTING PRINCIPLES GENERALLY ACCEPTED IN THE UNITED STATES OF AMERICA REQUIRES THE FOUNDATION TO REPORT INFORMATION REGARDING ITS EXPOSURE TO VARIOUS TAX POSITIONS TAKEN BY THE FOUNDATION. THE FOUNDATION HAS DETERMINED WHETHER ANY TAX POSITIONS HAVE MET THE RECOGNITION THRESHOLD AND HAVE MEASURED THE FOUNDATION'S EXPOSURE TO THOSE TAX POSITIONS. MANAGEMENT BELIEVES THAT THE FOUNDATION HAS ADEQUATELY ADDRESSED ALL RELEVANT TAX POSITIONS AND THAT THERE ARE NO UNRECORDED TAX LIABILITIES. FEDERAL AND STATE TAX AUTHORITIES GENERALLY HAVE THE RIGHT TO EXAMINE AND AUDIT THE PREVIOUS THREE YEARS OF TAX RETURNS FILED. ANY INTEREST OR PENALTIES ASSESSED TO THE FOUNDATION, OF WHICH THERE WERE NONE, ARE RECORDED IN ADMINISTRATIVE EXPENSES.
SCHEDULE D, PAGE 4, PART XI, LINE 2D	STRIDES FOR CJD EXPENSE 61,575
SCHEDULE D, PAGE 4, PART XII, LINE 2D	STRIDES FOR CJD EXPENSE 61,575

Schedule D (Form 990) 2021

Additional Data

Software ID:
Software Version:

- TIN:

SCHEDULE F(Form 990)

Department of the Treasury
Internal Revenue Service

Statement of Activities Outside the United States

Complete if the organization answered "Yes" to Form 990, Part IV, line 14b, 15, or 16. Right pointing arrow large image

Attach to Form 990. Right pointing arrow large image

Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047

2022

Open to Public Inspection

Name of the organization
CREUTZFELDT-JAKOB DISEASE
FOUNDATION INC

Employer identification number

65-0404623

Part I

General Information on Activities Outside the United States. Complete if the organization answered "Yes" on Form 990, Part IV, line 14b.

For grantmakers. Does the organization maintain records to substantiate the amount of its grants and

other assistance, the grantees’ eligibility for the grants or assistance, and the selection criteria used

to award the grants or assistance? . . . . . . . . . . . . . . . . . . . . . . . . .

Yes

For grantmakers. Describe in Part V the organization’s procedures for monitoring the use of its grants and other assistance outside the United States.

Activites per Region. (The following Part I, line 3 table can be duplicated if additional space is needed.)

(a) Region		(d) Activities conducted in region (by type) (such as, fundraising, program services, investments, grants to recipients located in the region)
	ITALY	GRANTS TO RECIPIENTS
	CANADA	GRANTS TO RECIPIENTS
	GERMANY	GRANTS TO RECIPIENTS
	SCOTLAND	GRANTS TO RECIPIENTS
	JAPAN	GRANTS TO RECIPIENTS
	SPAIN	GRANTS TO RECIPIENTS











3a	Sub-total ....
b	Total from continuation sheets to Part I ...
c	Totals (add lines 3a and 3b)

For Paperwork Reduction Act Notice, see the Instructions for Form 990.Cat. No. 50082W Schedule F (Form 990) 2022

Schedule F (Form 990) 2022

Page 2

Part II

Grants and Other Assistance to Organizations or Entities Outside the United States. Complete if the organization answered "Yes" on Form 990, Part IV, line 15, for any recipient who received more than $5,000. Part II can be duplicated if additional space is needed.

(d) Purpose of grant	(e) Amount of cash grant	(f) Manner of cash disbursement
CJD RESEARCH	50,000	WIRE TRANSFER
CJD RESEARCH	50,000	WIRE TRANSFER
CJD RESEARCH	98,400	WIRE TRANSFER
CJD RESEARCH	48,718	WIRE TRANSFER
CJD RESEARCH	100,000	WIRE TRANSFER
CJD RESEARCH	57,200	WIRE TRANSFER

2	Enter total number of recipient organizations listed above that are recognized as charities by the foreign country, recognized as tax-exempt by the IRS, or for which the grantee or counsel has provided a section 501(c)(3) equivalency letter .......
3	Enter total number of other organizations or entities .......................

Schedule F (Form 990) 2022

Schedule F (Form 990) 2022Page 3

Part III

Grants and Other Assistance to Individuals Outside the United States. Complete if the organization answered "Yes" on Form 990, Part IV, line 16.

Part III can be duplicated if additional space is needed.

(a) Type of grant or assistance		(b) Region	(c) Number of recipients	(d) Amount of cash grant	(e) Manner of cash disbursement	(f) Amount of noncash assistance	(g) Description of noncash assistance	(h) Method of valuation (book, FMV, appraisal, other)

Schedule F (Form 990) 2022

Page 4

Part IV

Foreign Forms

Schedule F (Form 990) 2022

Page 5

Part V

Supplemental Information
Provide the information required by Part I, line 2 (monitoring of funds); Part I, line 3, column (f) (accounting method; amounts of investments vs. expenditures per region); Part II, line 1 (accounting method); Part III (accounting method); and Part III, column (c) (estimated number of recipients), as applicable. Also complete this part to provide any additional information. See instructions.

ReturnReference	Explanation
SCHEDULE F, PAGE 1, PART I, LINE 2	THE ORGANIZATION AWARDS GRANTS BASED ON PROPOSED RESEARCH BUDGETS AND MONITORS THE STATUS OF THE RESEARCH THROUGH VARIOUS MEANS AS WELL UPDATES AND WRITTEN REPORTS ON PROJECTS PROVIDED AT THE FAMILY CONFERENCE.
SCHEDULE F, PAGE 1, PART I, LINE 3	ITALY 0 0 CANADA 0 0 GERMANY 0 0 SCOTLAND 0 0 JAPAN 0 0 SPAIN 0 0

Schedule F (Form 990) 2022

Additional Data

Software ID:
Software Version:

- TIN:

SCHEDULE G (Form 990)

Department of the Treasury
Internal Revenue Service

Supplemental Information Regarding
Fundraising or Gaming Activities

Complete if the organization answered "Yes" on Form 990, Part IV, lines 17, 18, or 19, or if the organization entered more than $15,000 on Form 990-EZ, line 6a. right arrow

Attach to Form 990 or Form 990-EZ.
right arrow

Go to www.irs.gov/Form990 for instructions and the latest information.

OMB No. 1545-0047

2022

Open to Public Inspection

Name of the organization
CREUTZFELDT-JAKOB DISEASE
FOUNDATION INC

Employer identification number

65-0404623

Part I

Fundraising Activities.Complete if the organization answered "Yes" on Form 990, Part IV, line 17.

Form 990-EZ filers are not required to complete this part.

Indicate whether the organization raised funds through any of the following activities. Check all that apply.

a	Mail solicitations	e	Solicitation of non-government grants
b	Internet and email solicitations	f	Solicitation of government grants
c	Phone solicitations	g	Special fundraising events
d	In-person solicitations

Did the organization have a written or oral agreement with any individual (including officers, directors, trustees

or key employees listed in Form 990, Part VII) or entity in connection with professional fundraising services?

YesNo

If "Yes," list the 10 highest paid individuals or entities (fundraisers) pursuant to agreements under which the fundraiser is
to be compensated at least $5,000 by the organization.

(i) Name and address of individual or entity (fundraiser)	(iii) Did fundraiser have custody or control of contributions?
	Yes	No










Total . . . . . . . . . . . . . . . . . . . .

List all states in which the organization is registered or licensed to solicit contributions or has been notified it is exempt from registration or licensing.

For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.

Cat. No. 50083H

Schedule G (Form 990) 2022

Page 2

Part II

Fundraising Events. Complete if the organization answered "Yes" on Form 990, Part IV, line 18, or reported more than $15,000 of fundraising event contributions and gross income on Form 990-EZ, lines 1 and 6b. List events with gross receipts greater than $5,000.

		(a) Event #1 STRIDES FOR CJD (event type)	(d) Total events (add col. (a) through col. (c))
1	Gross receipts . . . . .	728,199	728,199
2	Less: Contributions . . . .	595,795	595,795
3	Gross income (line 1 minus line 2) . . . . . .	132,404	132,404

4	Cash prizes . . . . .
5	Noncash prizes . . . .
6	Rent/facility costs . . . .
7	Food and beverages . . .
8	Entertainment . . . .
9	Other direct expenses . . .	61,575	61,575
10	Direct expense summary. Add lines 4 through 9 in column (d) . . . . . . . . . .		61,575
11	Net income summary. Subtract line 10 from line 3, column (d). . . . . . . . . .		70,829

Part III

Gaming. Complete if the organization answered "Yes" on Form 990, Part IV, line 19, or reported more than $15,000 on Form 990-EZ, line 6a.

		(a) Bingo	(b) Pull tabs/Instant bingo/progressive bingo	(c) Other gaming	(d) Total gaming (add col.(a) through col.(c))
1	Gross revenue . . . . .

2	Cash prizes . . . . .
3	Noncash prizes . . . .
4	Rent/facility costs . . . .
5	Other direct expenses . . .

Volunteer labor . . . .

	Yes %
	No

	Yes %
	No

	Yes %
	No

Direct expense summary. Add lines 2 through 5 in column (d) . . . . . . . . . . right arrow

Net gaming income summary. Subtract line 7 from line 1, column (d). . . . . . . . . right arrow

Enter the state(s) in which the organization conducts gaming activities:

Is the organization licensed to conduct gaming activities in each of these states? . . . . . . . .

YesNo

If "No," explain:

10a

Were any of the organization's gaming licenses revoked, suspended or terminated during the tax year? . . .

YesNo

If "Yes," explain:

Schedule G (Form 990) 2022

Page 3

Does the organization conduct gaming activities with nonmembers? . . . . . . . . . . .

YesNo

Is the organization a grantor, beneficiary or trustee of a trust or a member of a partnership or other entity

formed to administer charitable gaming? . . . . . . . . . . . . . . . . .

YesNo

Indicate the percentage of gaming activity conducted in:

The organization's facility . . . . . . . . . . . . . . . . . .

13a

An outside facility . . . . . . . . . . . . . . . . . . . .

13b

Enter the name and address of the person who prepares the organization's gaming/special events books and records:

Name

Address

15a

Does the organization have a contract with a third party from whom the organization receives gaming

revenue? . . . . . . . . . . . . . . . . . . . . . . . .

YesNo

If "Yes," enter the amount of gaming revenue received by the organization right arrow

$ and the

amount of gaming revenue retained by the third party right arrow

$ .

If "Yes," enter name and address of the third party:

Name

Address

Gaming manager information:

Name

Gaming manager compensation right arrow

Description of services provided right arrow

Director/officer Employee Independent contractor

Mandatory distributions:

Is the organization required under state law to make charitable distributions from the gaming proceeds to

retain the state gaming license? . . . . . . . . . . . . . . . . . . .

YesNo

Enter the amount of distributions required under state law distributed to other exempt organizations or spent

in the organization's own exempt activities during the tax year right arrow

Part IV

Supplemental Information. Provide the explanations required by Part I, line 2b, columns (iii) and (v); and Part III, lines 9, 9b, 10b, 15b, 15c, 16, and 17b, as applicable. Also provide any additional information. See instructions.

Return Reference	Explanation

Schedule G (Form 990) 2022

Additional Data

Software ID:
Software Version:

- TIN:

Note: To capture the full content of this document, please select landscape mode (11" x 8.5") when printing.

Schedule I
(Form 990)

Department of the Treasury
Internal Revenue Service

Grants and Other Assistance to Organizations,
Governments and Individuals in the United States

Complete if the organization answered "Yes," on Form 990, Part IV, line 21 or 22.
lBullet

Attach to Form 990.
lBullet

Go to www.irs.gov/Form990 for the latest information.

OMB No. 1545-0047

2022

Open to Public
Inspection

Name of the organization
CREUTZFELDT-JAKOB DISEASE
FOUNDATION INC

Employer identification number
65-0404623

Part I

General Information on Grants and Assistance

Does the organization maintain records to substantiate the amount of the grants or assistance, the grantees' eligibility for the grants or assistance, and
the selection criteria used to award the grants or assistance? ........................

Yes No

Describe in Part IV the organization's procedures for monitoring the use of grant funds in the United States.

Part II

Grants and Other Assistance to Domestic Organizations and Domestic Governments. Complete if the organization answered "Yes" on Form 990, Part IV, line 21, for any recipient

that received more than $5,000. Part II can be duplicated if additional space is needed.

(a) Name and address of organization or government	(b) EIN	(c) IRC section (if applicable)	(d) Amount of cash grant	(h) Purpose of grant or assistance
(1) CASE WESTERN RESERVE 10900 EUCLID AVENUE CLEVELAND,OH44106	34-1018922	501C3	100,000	RESEARCH
(2) UNIVERSITY OF TEXAS 7000 FANNIN STREET HOUSTON,TX77030	74-1761309	501C3	100,000	RESEARCH
(3) NATIONAL INSTITUTES OF HEALTH 903 SOUTH 4TH STREET HAMILTON,MT59840	52-0858115	501C3	47,115	RESEARCH

Enter total number of section 501(c)(3) and government organizations listed in the line 1 table ................. Bullet Image

Enter total number of other organizations listed in the line 1 table ........................ . Bullet Image

For Paperwork Reduction Act Notice, see the Instructions for Form 990.

Cat. No. 50055P

Schedule I (Form 990) 2022

Page 2

Part III

Grants and Other Assistance to Domestic Individuals. Complete if the organization answered "Yes" on Form 990, Part IV, line 22.
Part III can be duplicated if additional space is needed.

(a) Type of grant or assistance	(b) Number of recipients	(c) Amount of cash grant	(d) Amount of noncash assistance	(e) Method of valuation (book, FMV, appraisal, other)	(f) Description of noncash assistance

(1)
(2)
(3)
(4)
(5)
(6)
(7)

Part IV

Supplemental Information. Provide the information required in Part I, line 2; Part III, column (b); and any other additional information.

Return Reference	Explanation
SCHEDULE I, PAGE 1, PART I, LINE 2	THE ORGANIZATION AWARDS GRANTS BASED ON PROPOSED RESEARCH BUDGETS AND MONITORS THE STATUS OF THE RESEARCH THROUGH VARIOUS MEANS AS WELL AS UPDATES AND WRITTEN REPORTS ON PROJECTS PROVIDED AT THE FAMILY CONFERENCE

Schedule I (Form 990) 2022

Additional Data

Software ID:
Software Version:

- TIN:

SCHEDULE O
(Form 990)

Department of the Treasury
Internal Revenue Service

Supplemental Information to Form 990 or 990-EZ

Complete to provide information for responses to specific questions on
Form 990 or 990-EZ or to provide any additional information.
MediumBullet

Attach to Form 990 or 990-EZ.
MediumBullet

Go to www.irs.gov/Form990 for the latest information.

OMB No. 1545-0047

2021

Open to Public
Inspection

Name of the organization

CREUTZFELDT-JAKOB DISEASE
FOUNDATION INC

Employer identification number

65-0404623

Return Reference	Explanation
FORM 990 - ORGANIZATION'S MISSION	CREUTZFELDT-JAKOB DISEASE (CJD) IS A RARE, RAPIDLY PROGRESSIVE NEURODEGENERATIVE DISEASE, ONE OF SEVERAL PRION DISEASES CAUSED BY PRION PROTEINS THAT MISFOLD IN THE BRAIN. THERE IS NO TREATMENT OR CURE AND THE DISEASE IS INVARIABLY FATAL. THE MISSION OF THE CREUTZFELDT-JAKOB DISEASE FOUNDATION IS TO SUPPORT FAMILIES AFFECTED BY PRION DISEASE, RAISE AWARENESS, SUPPORT MEDICAL EDUCATION, AND FUND RESEARCH. WE CARRY OUT THIS MISSION THROUGH: -FAMILY SUPPORT INCLUDING A 7-DAY HELPLINE, REFERRALS, SUPPORT GROUPS, AND TELECONFERENCE SPEAKER SERIES -EDUCATION AND INFORMATION FOR FAMILIES, CAREGIVERS, MEDICAL PROFESSIONALS, FUNERAL PROFESSIONALS, AND INFECTION CONTROL SPECIALISTS -ADVOCACY WITH SENATORS AND PUBLIC POLICY MAKERS -ANNUAL FAMILY CONFERENCE THAT BRINGS TOGETHER AFFECTED FAMILIES AND PRION DISEASE EXPERTS -FAMILY WORKSHOPS HELD AROUND THE COUNTRY -COLLABORATION WITH SCIENTISTS, CLINICIANS, MEDICAL CENTERS, HEALTH AUTHORITIES, PROFESSIONAL ORGANIZATIONS, AND INTERNATIONAL PATIENT ASSOCIATIONS -COMMUNICATION OF CURRENT RESEARCH AND FOUNDATION ACTIVITIES VIA ANNUAL CONFERENCE, WEBSITE, SOCIAL MEDIA, EMAILS, AND FAMILY TELECONFERENCES -RESEARCH GRANT PROGRAM, WHICH INCLUDES NATIONAL AND INTERNATIONAL AWARDEES SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE
FORM 990, PAGE 1, PART I, LINE 6	THE CJD FOUNDATION'S VOLUNTEERS INCLUDE THOSE WHO HAVE HAD A LOVED ONE AFFECTED, OR WHO UNDERSTAND THE IMPACT OF PRION DISEASE. THEY ARE PASSIONATE ABOUT OUR MISSION AND WANT TO RAISE AWARENESS, EDUCATE MEDICAL PROFESSIONALS AND THE PUBLIC, AND SUPPORT RESEARCH FOR A CURE. VOLUNTEER ROLES INCLUDE ASSISTING WITH OUR HELPLINE, ADVOCACY, MEDICAL EDUCATION, AND FAMILY SUPPORT PROGRAMS AND PEER COUNSELING THROUGH SUPPORT GROUPS. SOME VOLUNTEER THEIR SKILLS IN MARKETING, WEB DESIGN, PUBLIC RELATIONS, LEGAL, AND FINANCIAL AREAS. OTHERS REVIEW RESEARCH GRANT APPLICATIONS OR ASSIST WITH OUR FAMILY CONFERENCE, FAMILY WORKSHOPS, OR FUNDRAISING/AWARENESS- RAISING EVENTS. IN TOTAL, 340 CONTRIBUTED OVER 6,500 HOURS. WITHOUT THE EFFORTS OF THESE VOLUNTEERS, WE COULD NOT HAVE SERVED OUR COMMUNITY WITH THE PROGRAMS WE OFFER.
FORM 990, PAGE 2, PART III, LINE 4A	THE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, CAREGIVER SUPPORT GROUPS, AND SUPPORT AND/OR REFERRALS TO THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD (TAPCJD). THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR TAPCJD AND OFFERS GUIDANCE, EDUCATION, AND SUPPORT TO FAMILIES AFFECTED BY PRION DISEASE, WHILE COLLECTING NATURAL HISTORY DATA THAT CAN BE USED FOR A VARIETY OF RESEARCH PURPOSES. HELPLINE SUPPORT: THE CJD FOUNDATION RESPONDED TO ALMOST 2,000 CALLS AND EMAILS IN 2022, PROVIDING INFORMATION AND REFERRALS AND RESPONDING TO QUESTIONS AND CONCERNS FROM FAMILY MEMBERS, MEDICAL PROFESSIONALS, FUNERAL DIRECTORS, AND INFECTION CONTROL SPECIALISTS. WE SENT CAREGIVING BINDERS TO MORE THAN 68 FAMILIES AND HOSPICE PROVIDERS. THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR THE TAPCJD PROGRAM. VIRTUAL FAMILY CONFERENCE: DURING THE VIRTUAL CONFERENCEMORE MORE THAN 707 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS PARTICIPATIED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2022 BY VIEWING THE LIVE SESSIONS. CLOSE TO 11,000 VIEWED THE SESSIONS ONLINE DURING THE YEAR. CONFERENCE SESSIONS INCLUDED AN UPDATE FROM THE CENTERS FOR DISEASE CONTROL AND PREVENTION, RESEARCH UPDATES, AND INFORMATION ON SURVEILLANCE, TREATMENT, AND EARLY DIAGNOSIS OF CJD. QUESTIONAIRE: THE CJD FOUNDATION IN COLLABORATION WITH THE NATIONAL PRION DISEASE PATHOLOGY SUREILLANCE CENTER CREATED A PATIENT QUESTIONNAIRE IN 2004. TO DATE MORE THAN 1,416 FAMILIES HAVE COMPLETED QUESTIONNAIRES. THIS ENABLES FAMILIES TO DOCUMENT THEIR LOVED ONE'S CASE AND PROVIDES ANNOYMOUS DATA FOR DOCTORS AND SCIENTISTS ON PATTERNS OF SYMPTOMS, DISEASE ONSEST AND DURATION, AND MORE RESULTS ARE COMPLIED THORUGHOUT THE YEAR AND SHARED ANNUALLY AT THE CJD FOUNDATION FAMILY CONFERENCE. SUPPORT GROUPS, WEBINARS AND SPEAKER SERIES: WE HOSTED 30 TELECONFERENCE SUPPORT GROUPS IN 2022. THESE CALLS ALLOW CONSTITUENTS WHO CANNOT ATTEND IN-PERSON EVENTS TO ACCESS AN EXPERT AND ADDRESS THEIR QUESTIONS AND CONCERNS. INTERVIEWS WITH PRION DISEASE EXPERTS WERE RECORDED AND POSTED TO THE CJD FOUNDATION WEBSITE
FORM 990, PAGE 2, PART III, LINE 4D	ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS.
FORM 990, PAGE 6, PART VI, LINE 2	STUART YAFFA JEFFREY YAFFA TREASURER BOARD MEMBER FAMILY
FORM 990, PAGE 6, PART VI, LINE 11B	THE CREUTZFELDT-JAKOB DISEASE FOUNDATION RECEIVES A COPY OF FORM 990 TO REVIEW BEFORE THE RETURN IS FILED. FORM 990 IS REVIEWED BY THE PRESIDENT AND BOARD OF DIRECTORS FOR REVIEW OF ACCURACY AND COMPLETENESS.
FORM 990, PAGE 6, PART VI, LINE 12C	THE CONFLICT OF INTEREST POLICY IS ENFORCED BY THE BOARD AND BOARD MEMBERS WHO ARE REQUIRED TO DISCLOSE KNOWN CONFLICTS.
FORM 990, PAGE 6, PART VI, LINE 15A	THE ORGANIZATION RESEARCHED AND COMPARED THE SALARY OF OTHER CEOS WORKING FOR OTHER NON-PROFIT ORGANIZATIONS OF ABOUT THE SAME SIZE. ONCE A FAIR AND COMPARABLE COMPENSATION WAS DETERMINED THE ORGANIZATION PRESENTED THE SALARY TO THE EXECUTIVE BOARD AND THE FULL BOARD FOR APPROVAL. THE CEO WAS NOT PRESENT DURING THE VOTE ON COMPENSATION.
FORM 990, PAGE 6, PART VI, LINE 19	THE ORGANIZATION MAKES ITS GOVERNING DOCUMENTS AND FINANCIAL STATEMENTS AVAILABLE UPON REQUEST.
FORM 990, PART XI, LINE 9	STRIDES FOR CJD EXPENSE 61,575 STRIDES FOR CJD EXPENSE -61,575

For Paperwork Reduction Act Notice, see the Instructions for Form 990 or 990-EZ.

Cat. No. 51056K

Schedule O (Form 990) 2021

Additional Data

Software ID:
Software Version:

		Prior Year	Current Year
8	Contributions and grants (Part VIII, line 1h) .........	2,482,682	2,735,803
9	Program service revenue (Part VIII, line 2g) .........	10,508	0
10	Investment income (Part VIII, column (A), lines 3, 4, and 7d ) ....	46,338	37,113
11	Other revenue (Part VIII, column (A), lines 5, 6d, 8c, 9c, 10c, and 11e)	12,105	89,001
12	Total revenue—add lines 8 through 11 (must equal Part VIII, column (A), line 12)	2,551,633	2,861,917
13	Grants and similar amounts paid (Part IX, column (A), lines 1–3 )...	630,000	651,433
14	Benefits paid to or for members (Part IX, column (A), line 4).....		0
15	Salaries, other compensation, employee benefits (Part IX, column (A), lines 5–10)	299,517	370,895
16a	Professional fundraising fees (Part IX, column (A), line 11e) .....		0
b	Total fundraising expenses (Part IX, column (D), line 25) 60,296
17	Other expenses (Part IX, column (A), lines 11a–11d, 11f–24e)....	223,065	252,114
18	Total expenses. Add lines 13–17 (must equal Part IX, column (A), line 25)	1,152,582	1,274,442
19	Revenue less expenses. Subtract line 18 from line 12.......	1,399,051	1,587,475
		Beginning of Current Year	End of Year
20	Total assets (Part X, line 16).............	5,032,702	6,412,924
21	Total liabilities (Part X, line 26).............	80,725	66,562
22	Net assets or fund balances. Subtract line 21 from line 20.....	4,951,977	6,346,362

Sign Here

	Signature of officer	Date

	Type or print name and title


4a	(Code: ) (Expenses $ 324,143 including grants of $ ) (Revenue $ )
	THE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY WORKSHOPS, TELECONFERENCE SUPPORT GROUPS, SPEAKER SERIES, BEREAVEMENT SUPPORT GROUPS, CAREGIVER SUPPORT GROUPS, AND SUPPORT AND/OR REFERRALS TO THE TELENEUROLOGY ASSESSMENT PROGRAM FOR CJD (TAPCJD). THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR TAPCJD AND OFFERS GUIDANCE, EDUCATION, AND SUPPORT TO FAMILIES AFFECTED BY PRION DISEASE, WHILE COLLECTING NATURAL HISTORY DATA THAT CAN BE USED FOR A VARIETY OF RESEARCH PURPOSES. HELPLINE SUPPORT: THE CJD FOUNDATION RESPONDED TO ALMOST 2,000 CALLS AND EMAILS IN 2022, PROVIDING INFORMATION AND REFERRALS AND RESPONDING TO QUESTIONS AND CONCERNS FROM FAMILY MEMBERS, MEDICAL PROFESSIONALS, FUNERAL DIRECTORS, AND INFECTION CONTROL SPECIALISTS. WE SENT CAREGIVING BINDERS TO MORE THAN 68 FAMILIES AND HOSPICE PROVIDERS. THE CJD FOUNDATION PROVIDES FUNDING AND REFERRALS FOR THE TAPCJD PROGRAM. VIRTUAL FAMILY CONFERENCE: DURING THE VIRTUAL CONFERENCEMORE MORE THAN 707 FAMILY MEMBERS, PRION DISEASE EXPERTS, AND PROFESSIONALS PARTICIPATIED IN OUR ANNUAL CJD FOUNDATION FAMILY CONFERENCE IN 2022 BY VIEWING THE LIVE SESSIONS. CLOSE TO 11,000 VIEWED THE SESSIONS ONLINE DURING THE YEAR. CONFERENCE SESSIONS INCLUDED AN UPDATE FROM THE CENTERS FOR DISEASE CONTROL AND PREVENTION, RESEARCH UPDATES, AND INFORMATION ON SURVEILLANCE, TREATMENT, AND EARLY DIAGNOSIS OF CJD. QUESTIONAIRE: THE CJD FOUNDATION IN COLLABORATION WITH THE NATIONAL PRION DISEASE PATHOLOGY SUREILLANCE CENTER CREATED A PATIENT QUESTIONNAIRE IN 2004. TO DATE MORE THAN 1,416 FAMILIES HAVE COMPLETED QUESTIONNAIRES. THIS ENABLES FAMILIES TO DOCUMENT THEIR LOVED ONE'S CASE AND PROVIDES ANNOYMOUS DATA FOR DOCTORS AND SCIENTISTS ON PATTERNS OF SYMPTOMS, DISEASE ONSEST AND DURATION, AND MORE RESULTS ARE COMPLIED THORUGHOUT THE YEAR AND SHARED ANNUALLY AT THE CJD FOUNDATION FAMILY CONFERENCE. SUPPORT GROUPS, WEBINARS AND SPEAKER SERIES: WE HOSTED 30 TELECONFERENCE SUPPORT GROUPS IN 2022. THESE CALLS ALLOW CONSTITUENTS WHO CANNOT ATTEND IN-PERSON EVENTS TO ACCESS AN EXPERT AND ADDRESS THEIR QUESTIONS AND CONCERNS. INTERVIEWS WITH PRION DISEASE EXPERTS WERE RECORDED AND POSTED TO THE CJD FOUNDATION WEBSITE

4b	(Code: ) (Expenses $ 692,093 including grants of $ 651,433 ) (Revenue $ )
	IN 2022, THE CJD FOUNDATION AWARDED 651,433 IN GRANTS TO 10 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 36 RESEARCHERS WORLDWIDE APPLIED. GRANT RECIPIENTS PRESENT THEIR RESEARCH AT THE CJD FOUNDATION'S ANNUAL FAMILY CONFERENCE. THE CJD FOUNDATION HAS AWARDED MORE THAN 77 RESEARCH GRANTS SINCE 2006, FUNDING A NUMBER OF GROUNDBREAKING PROJECTS THAT HAVE LED TO IMPORTANT NEW DISCOVERIES. FUNDING COMES FROM FAMILY MEMORIAL RESEARCH GRANTS AND FROM THE FUNDRAISING ACTIVITIES OF THE CJD FOUNDATION.

4c	(Code: ) (Expenses $ 33,448 including grants of $ ) (Revenue $ )
	THE CJD FOUNDATION HOSTS GRAND ROUNDS PRESENTATION, INFECTION CONTROL SEMINARS, AND FUNERAL EDUCATION AROUND THE COUNTRY, AT NO CHARGE. OUR MEDICAL EDUCATION PROGRAMS ARE INSTRUCTED BY PRION DISEASE EXPERTS. IN 2022, WE PROVIDED MEDICAL EDUCATION, FUNERAL PROGRAM AT THE VIRIGINA FUNERAL DIRECTOR'S ASSOCIATION. WE ALSO RESPONDED TO REQUESTS FOR INFORMATION FROM 80 MEDICAL PROFESSIONALS VIA OUR HELPLINE, AND MADE INFORMATION AVAILABLE TO MEDICAL, INFECTIOUS DISEASE, HOSPICE AND GENETIC COUNSELING PROFESSIONALS THROUGH OUR WEBSITE, EDUCATIONAL BINDERS, AND ANNUAL CONFERENCE WHICH IS RECORDED AND POSTED ON OUR WEBSITE.

	(Code: ) (Expenses $ 36,617 including grants of $ ) (Revenue $ )
	ADVOCACY WITH POLITICAL REPRESENTATIVES AND PUBLIC POLICY MAKERS.

4d	Other program services (Describe in Schedule O.)
	(Expenses $ 36,617 including grants of $ ) (Revenue $ )
4e	Total program service expenses1,086,301

(A) Name and title	(B) Average hours per week (list any hours for related organizations below dotted line)	(C) Position (do not check more than one box, unless person is both an officer and a director/trustee)		(D) Reportable compensation from the organization (W-2/1099-MISC/1099-NEC)	(E) Reportable compensation from related organizations (W-2/1099-MISC/1099-NEC)	(F) Estimated amount of other compensation from the organization and related organizations
(A) Name and title
(18) MARIA THACKER-GOETHE........................................................................ BOARD MEMBER	2.00 .......................	X		0	0	0
(19) MICHAEL VITANZA........................................................................ BOARD MEMBER	2.00 .......................	X		0	0	0
(20) JEFFREY YAFFA........................................................................ BOARD MEMBER	2.00 .......................	X		0	0	0
(21) STUART YAFFA........................................................................ TREASURER	2.00 .......................	X	X	0	0	0

1b	Sub-Total................
c	Total from continuation sheets to Part VII, Section A....
d	Total (add lines 1b and 1c)...........	111,457

1	Briefly describe the organization’s mission or most significant activities: TO SUPPORT FAMILIES AFFECTED BY PRION DISEASE, RAISE AWARENESS, AND SUPPORT MEDICAL EDUCATION AND RESEARCH.
2	Check this box
3	Number of voting members of the governing body (Part VI, line 1a) ........	3	20
4	Number of independent voting members of the governing body (Part VI, line 1b) .....	4	20
5	Total number of individuals employed in calendar year 2021 (Part V, line 2a) ......	5	6
6	Total number of volunteers (estimate if necessary) .............	6	340
7a	Total unrelated business revenue from Part VIII, column (C), line 12 ........	7a	0
b	Net unrelated business taxable income from Form 990-T, Part I, line 11 .........	7b

(A) Name and business address	(B) Description of services	(C) Compensation





2 Total number of independent contractors (including but not limited to those listed above) who received more than $100,000 of compensation from the organization

1a	Federated campaigns..		1a
b	Membership dues..		1b
c	Fundraising events..		1c	595,795
d	Related organizations		1d
e	Government grants (contributions)		1e	74,396

f	All other contributions, gifts, grants, and similar amounts not included above		1f	2,065,612

g	Noncash contributions included in lines 1a - 1f:$		1g	5,003

h Total. Add lines 1a-1f.......		2,735,803

		Business Code
2a
b
c
d
e
f	All other program service revenue.
g	Total. Add lines 2a–2f .....

3 Investment income (including dividends, interest, and othersimilar amounts) ......			83,547		83,547
4 Income from investment of tax-exempt bond proceeds
5 Royalties...........
		(ii) Personal	(i) Real
6a	Gross rents			6a
b	Less: rental expenses			6b
c	Rental income or (loss)			6c
d	Net rental income or (loss).......
		(ii) Other	(i) Securities
7a	Gross amount from sales of assets other than inventory		1,571,596	7a
b	Less: cost or other basis and sales expenses		1,618,030	7b
c	Gain or (loss)		-46,434	7c
d	Net gain or (loss).........			-46,434		-46,434
8a	Gross income from fundraising events (not including $ 595,795of contributions reported on line 1c). See Part IV, line 18 ....
			8a	132,404
b	Less: direct expenses ...		8b	61,575
c	Net income or (loss) from fundraising events..			70,829		70,829
9a	Gross income from gaming activities. See Part IV, line 19 ...
			9a	10,690
b	Less: direct expenses ...		9b
c	Net income or (loss) from gaming activities..			10,690		10,690
10a	Gross sales of inventory, less returns and allowances ..
			10a
b	Less: cost of goods sold ..		10b
c	Net income or (loss) from sales of inventory..
Business Code			Miscellaneous Revenue
11a	MISCELLANEOUS		541900	7,482		7,482
b
c
d	All other revenue ....
e	Total. Add lines 11a–11d ......			7,482
12	Total revenue. See instructions.....			2,861,917		126,114

1	Grants and other assistance to domestic organizations and domestic governments. See Part IV, line 21 ....	247,115	247,115
2	Grants and other assistance to domestic individuals. See Part IV, line 22 ...........
3	Grants and other assistance to foreign organizations, foreign governments, and foreign individuals. See Part IV, lines 15 and 16. .............	404,318	404,318
4	Benefits paid to or for members .......
5	Compensation of current officers, directors, trustees, and key employees ...........	111,457	84,875	16,785	9,797
6	Compensation not included above, to disqualified persons (as defined under section 4958(f)(1)) and persons described in section 4958(c)(3)(B) .........
7	Other salaries and wages........	231,744	181,225	29,612	20,907
8	Pension plan accruals and contributions (include section 401(k) and 403(b) employer contributions) ....
9	Other employee benefits .......
10	Payroll taxes ...........	27,694	21,601	3,600	2,493
11	Fees for services (non-employees):
a	Management ......
b	Legal .........
c	Accounting ...........	12,508		12,508
d	Lobbying ...........
e	Professional fundraising services. See Part IV, line 17
f	Investment management fees ......
g	Other (If line 11g amount exceeds 10% of line 25, column (A) amount, list line 11g expenses on Schedule O)	55,657	43,413	7,236	5,008
12	Advertising and promotion ....
13	Office expenses .......	21,852	6,596	14,909	347
14	Information technology ......
15	Royalties ..
16	Occupancy ...........	23,415	18,264	3,044	2,107
17	Travel ............	712		712
18	Payments of travel or entertainment expenses for any federal, state, or local public officials .
19	Conferences, conventions, and meetings ....
20	Interest ...........	121		121
21	Payments to affiliates .......
22	Depreciation, depletion, and amortization ..	1,575		1,575
23	Insurance ...	6,903		6,903
24	Other expenses. Itemize expenses not covered above (List miscellaneous expenses in line 24e. If line 24e amount exceeds 10% of line 25, column (A) amount, list line 24e expenses on Schedule O.)
a	FAMILY CONFERENCE	35,000	35,000
b	PROGRAM EXPENSE	25,926	25,926
c	BANK SERVICE CHARGES	11,926		11,926
d	DONATION COLLECTION FEES	10,499	10,499
e	All other expenses	46,020	7,469	18,914	19,637
25	Total functional expenses. Add lines 1 through 24e	1,274,442	1,086,301	127,845	60,296
26	Joint costs. Complete this line only if the organization reported in column (B) joint costs from a combined educational campaign and fundraising solicitation. Check here if following SOP 98-2 (ASC 958-720).

1	Cash–non-interest-bearing ........			268	1	439
2	Savings and temporary cash investments .........			611,779	2	323,687
3	Pledges and grants receivable, net ......			31,692	3	62,062
4	Accounts receivable, net .............			2,196	4	14,888
5	Loans and other receivables from any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons .......
					5
6	Loans and other receivables from other disqualified persons (as defined under section 4958(f)(1)), and persons described in section 4958(c)(3)(B) ...
					6
7	Notes and loans receivable, net ...........				7
8	Inventories for sale or use ............			7,184	8	7,967
9	Prepaid expenses and deferred charges ......			2,864	9	29,591
10a	Land, buildings, and equipment: cost or other basis. Complete Part VI of Schedule D	10a	96,364
b	Less: accumulated depreciation	10b	36,893	4,445	10c	59,471
11	Investments—publicly traded securities .			4,370,985	11	5,913,530
12	Investments—other securities. See Part IV, line 11 .....				12
13	Investments—program-related. See Part IV, line 11 ..				13
14	Intangible assets ...............				14
15	Other assets. See Part IV, line 11 ...........			1,289	15	1,289
16	Total assets. Add lines 1 through 15 (must equal line 33)...			5,032,702	16	6,412,924

17	Accounts payable and accrued expenses .....	20,525	17	13,417
18	Grants payable ...	60,200	18
19	Deferred revenue .........		19
20	Tax-exempt bond liabilities .........		20
21	Escrow or custodial account liability. Complete Part IV of Schedule D		21
22	Loans and other payables to any current or former officer, director, trustee, key employee, creator or founder, substantial contributor, or 35% controlled entity or family member of any of these persons .........
			22
23	Secured mortgages and notes payable to unrelated third parties ..		23
24	Unsecured notes and loans payable to unrelated third parties ..		24	53,145
25	Other liabilities (including federal income tax, payables to related third parties, and other liabilities not included on lines 17 - 24). Complete Part X of Schedule D		25
26	Total liabilities. Add lines 17 through 25..	80,725	26	66,562

	Organizations that follow FASB ASC 958, check here and complete lines 27, 28, 32, and 33.
27	Net assets without donor restrictions ..........	4,531,977	27	5,123,295
28	Net assets with donor restrictions ...........	420,000	28	1,223,067
	Organizations that do not follow FASB ASC 958, check here and complete lines 29 through 33.
29	Capital stock or trust principal, or current funds .....		29
30	Paid-in or capital surplus, or land, building or equipment fund ...		30
31	Retained earnings, endowment, accumulated income, or other funds		31
32	Total net assets or fund balances ...........	4,951,977	32	6,346,362
33	Total liabilities and net assets/fund balances ........	5,032,702	33	6,412,924

1	Was the organization a U.S. transferor of property to a foreign corporation during the tax year? If "Yes," the organization may be required to file Form 926, Return by a U.S. Transferor of Property to a Foreign Corporation (see Instructions for Form 926). . . . . . . . . . . . . . . . . . . . . . . . . . . . . .	Yes	No
2	Did the organization have an interest in a foreign trust during the tax year? If "Yes," the organization may be required to separately file Form 3520, Annual Return to Report Transactions with Foreign Trusts and Receipt of Certain Foreign Gifts, and/or Form 3520-A, Annual Information Return of Foreign Trust With a U.S. Owner (see Instructions for Forms 3520 and 3520-A; don't file with Form 990). . . . . . . . . . . . . . . . . . . . . . . .	Yes	No
3	Did the organization have an ownership interest in a foreign corporation during the tax year? If "Yes," the organization may be required to file Form 5471, Information Return of U.S. Persons with Respect to Certain Foreign Corporations. (see Instructions for Form 5471). . . . . . . . . . . . . . . . . . . . . . . . . . . .	Yes	No
4	Was the organization a direct or indirect shareholder of a passive foreign investment company or a qualified electing fund during the tax year? If “Yes,” the organization may be required to file Form 8621, Information Return by a Shareholder of a Passive Foreign Investment Company or Qualified Electing Fund. (see Instructions for Form 8621) .	Yes	No
5	Did the organization have an ownership interest in a foreign partnership during the tax year? If "Yes," the organization may be required to file Form 8865, Return of U.S. Persons with Respect to Certain Foreign Partnerships (see Instructions for Form 8865). . . . . . . . . . . . . . . . . . . . . . . . . . . . . .	Yes	No
6	Did the organization have any operations in or related to any boycotting countries during the tax year? If "Yes," the organization may be required to separately file Form 5713, International Boycott Report (see Instructions for Form 5713; don't file with Form 990).. . . . . . . . . . . . . . . . . . . . . . . . . . . .	Yes	No