EIN 65-0404623

Creutzfeldt-Jakob Disease Foundation

IRS 501(c) type
501(c)(3)
Num. employees
6
City
State
Year formed
1993
Most recent tax filings
2023-12-01
NTEE code, primary
Description
Supporting families affected by prion disease, raising awareness, and funding medical education and research nationwide.
Total revenues
$2,943,480
2023
Total expenses
$1,541,598
2023
Total assets
$8,137,536
2023
Num. employees
6
2023

Program areas at Creutzfeldt-Jakob Disease Foundation

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 2,200 calls and emails in 2023, 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 158 families and hospice providers. At our 2023 cjd Foundation family conference, a total of 150 family members, prion Disease experts, and professionals attended. 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. Support groups, webinars and speaker series: we hosted 36 teleconference support groups in 2023. 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.
The cjd Foundation hosts grant round presentation, infection control seminars, and funeral education around the country, at no charge. Our medical education programs are instructed by prion Disease experts. In 2023, we provided medical education: medical education neurology grand rounds were held in: -Texas at dshs, which includes staff from dshs, health and human services commission, local health departments, local mental health centers, hospitals, institutions of higher education, and others throughout Texas. -imed/salt lake valley neurology department -baystate university of Massachusetts medical school -cape cod falmouth hospital in falmouth, ma. Funeral education presenations were held in: -indianapolis, Indiana we also responded to requests for information from 60 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.
In 2023, the cjd Foundation awarded 718,205 in grants to 9 researchers selected by our scientific advisory committee, which comprises international prion Disease experts. 45 researchers worldwide applied. Grant recipients present their research at the cjd Foundation's annual family conference. The cjd Foundation has awarded more than 86 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.
Advocacy with political representatives and public policy makers.

Grants made by Creutzfeldt-Jakob Disease Foundation

GranteeGrant descriptionAmount
Trustees of Boston UniversityResearch$100,000
Creighton UniversityResearch$100,000

Who funds Creutzfeldt-Jakob Disease Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Jeffrey and Mary Smith Family FoundationUnrestricted Grant$60,000
Schwab Charitable FundPublic, Societal Benefit$35,630
American Online Giving FoundationGeneral Support$31,523
...and 15 more grants received

Personnel at Creutzfeldt-Jakob Disease Foundation

NameTitleCompensation
Deborah YobsPresident and Executive Director$111,457
Lori NusbaumProgram Director
Tim SchwisterSecretary$0
Patricia McGillTreasurer$0
Mayra LichterChairman , Re$0
...and 4 more key personnel

Financials for Creutzfeldt-Jakob Disease Foundation

RevenuesFYE 12/2023
Total grants, contributions, etc.$2,770,443
Program services$41,100
Investment income and dividends$245,716
Tax-exempt bond proceeds$0
Royalty revenue$0
Net rental income$0
Net gain from sale of non-inventory assets$-161,414
Net income from fundraising events$36,995
Net income from gaming activities$0
Net income from sales of inventory$0
Miscellaneous revenues$10,640
Total revenues$2,943,480

Form 990s for Creutzfeldt-Jakob Disease Foundation

Fiscal year endingDate received by IRSFormPDF link
2023-122024-08-30990View PDF
2022-122023-10-13990View PDF
2021-122022-10-14990View PDF
2020-122021-08-06990View PDF
2019-122021-02-22990View PDF
...and 10 more Form 990s
Data update history
December 23, 2024
Received grants
Identified 2 new grant, including a grant for $10,000 from Barra Foundation
November 12, 2024
Posted financials
Added Form 990 for fiscal year 2023
November 5, 2024
Updated personnel
Identified 2 new personnel
September 21, 2024
Received grants
Identified 1 new grant, including a grant for $31,100 from The Blackbaud Giving Fund
July 11, 2024
Received grants
Identified 6 new grant, including a grant for $42,945 from PayPal Giving Fund
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthEducationDiseases and disorders
Characteristics
Political advocacyProvides grantsConducts researchLobbyingFundraising eventsOperates internationallyNational levelReceives government fundingCommunity engagement / volunteeringTax deductible donationsAccepts online donations
General information
Address
3634 W Market St Suite 110
Akron, OH 44333
Metro area
Akron, OH
County
Summit County, OH
Website URL
cjdfoundation.org/ 
Phone
(800) 659-1991
IRS details
EIN
65-0404623
Fiscal year end
December
Taxreturn type
Form 990
Year formed
1993
Eligible to receive tax-deductible contributions (Pub 78)
Yes
Categorization
NTEE code, primary
G83: Alzheimers Disease
NAICS code, primary
813212: Health and Disease Research Fundraising Organizations
Parent/child status
Independent
California AB-488 details
AB 488 status
May Operate or Solicit for Charitable Purposes
Charity Registration status
Current
FTB status revoked
Not revoked
AG Registration Number
CT0272319
FTB Entity ID
None yet
AB 488 data last updated ("as-of") date
2025-01-15
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