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Health : Diseases, Disorders, and Disciplines

Creutzfeldt-Jakob Disease Foundation

Supporting Families Affected by Prion Disease

four stars

93.90

3610 W. Market Street Suite 110
Akron, OH 44333
tel: (800) 659-1991   Web Site
EIN: 65-0404623

Board Leadership
Mayra Lichter
Co-Founder and Chair

CEO
Debbie Yobs
President

  Score
(out of 100)
Rating
Overall Score & Rating 93.90 four stars
  Financial 96.78 four stars
  Accountability & Transparency 92.00 four stars
This rating was published 04/01/2020 and includes data from FY2018, the most recent 990 received at that time.

The mission of the Creutzfeldt-Jakob Disease Foundation is to support families affected by Prion Disease, raise awareness, and support medical education and research. We provide family support including a 7-day HelpLine, referrals, support groups, and teleconference speaker series; education and information for families, caregivers, medical professionals, and funeral professionals; advocacy with political representatives and public policy makers; and a research grant program, with international awardees selected by our Scientific Advisory Committee.

The mission of the Creutzfeldt-Jakob Disease Foundation is to support families affected by Prion Disease, raise awareness, and support medical education and research. We provide family support including a 7-day HelpLine, referrals, support groups, and teleconference speaker series; education and information for families, caregivers, medical professionals, and funeral professionals; advocacy with political representatives and public policy makers; and a research grant program, with international awardees selected by our Scientific Advisory Committee.

Impact Information

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Financial

four stars

96.78

Accountability & Transparency

four stars

92.00

This rating was published 04/01/2020 and includes data from FY2018, the most recent 990 received at that time.
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)
79.3%
  Administrative Expenses 12.8%
  Fundraising Expenses 7.8%
  Fundraising Efficiency $0.05
  Working Capital Ratio (years) 2.45
  Program Expenses Growth 7.4%
  Liabilities to Assets 0.5%
All data for Financial Performance Metrics calculations was provided by Creutzfeldt-Jakob Disease Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Creutzfeldt-Jakob Disease Foundation on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
Creutzfeldt-Jakob Disease Foundation (OH) 93.90 four stars
Immune Deficiency Foundation (MD) 93.68 four stars
Autism Society of America (MD) 86.32 three stars
Dan Marino Foundation (FL) 96.46 four stars
The Association for Frontotemporal Degeneration (PA) 99.71 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $1,127,008
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $318,148
   Related Organizations $0
   Government Grants $66,737
Total Contributions $1,511,893
   Program Service Revenue $30,535
Total Primary Revenue $1,542,428
   Other Revenue $55,812
TOTAL REVENUE $1,598,240
   
EXPENSES  
   Program Expenses $705,901
   Administrative Expenses $104,964
   Fundraising Expenses $63,883
TOTAL FUNCTIONAL EXPENSES $874,748
   
Payments to Affiliates $0
Excess (or Deficit) for the year $723,492
   
Net Assets $2,009,032

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Family Support $298,918 42.3%
Research Grants $309,927 43.9%
Medical Education $49,270 7.0%

Ratings History
Creutzfeldt-Jakob Disease Foundation has received 2 consecutive 4-star ratings from Charity Navigator.

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2018-12 04/01/2020 93.90 four stars
2017-12 11/01/2019 93.23 four stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 65-0404623
Name in IRS Master File CREUTZFELDT-JAKOB DISEASE FOUNDATION INC
NTEE Code [Not Provided by IRS]
NTEE Classification [Not Provided by IRS]
NTEE Type [Not Provided by IRS]
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities (161) Scientific research (diseases)
(179) Other health services
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date September, 1994
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End December
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • December, 2017
  • December, 2016
  • December, 2015
  • December, 2014
  • December, 2013
Compensation % of Expenses Paid to Title
$111,227 12.71% Deborah Yobs President

Highly Rated

Charity Name & State Overall Score Overall Rating
Creutzfeldt-Jakob Disease Foundation (OH) 93.90 four stars
Tourette Association of America (NY) 87.13 three stars
Massachusetts Down Syndrome Congress (MA) 89.46 three stars
American Autoimmune Related Diseases Association (MI) 98.23 four stars
Glaucoma Research Foundation (CA) 90.35 four stars

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Charity Contact Info

Creutzfeldt-Jakob Disease Foundation
3610 W. Market Street
Suite 110
Akron, OH 44333
tel: (800) 659-1991
fax: (234) 466-7077
EIN: 65-0404623

Visit Web Site

Board Leadership

Mayra Lichter
Co-Founder and Chair

CEO

Debbie Yobs
President

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