Mission:

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 provi ... (More)

Creutzfeldt-Jakob Disease Foundation is a 501(c)(3) organization, with an IRS ruling year of 1994, and donations are tax-deductible.  Cause: Diseases, Disorders, and Disciplines


Contact Information

  www.cjdfoundation.org

 3610 W. Market Street
Suite 110
Akron OH 44333 


You are viewing this organization's new Charity Navigator profile page. To view the legacy version, click here.

Star Rating System


Charity Navigator evaluates a nonprofit organization’s financial health including measures of stability, efficiency and sustainability. We also track accountability and transparency policies to ensure the good governance and integrity of the organization.




Exceptional

This charity's score is 93.66, earning it a 4-Star rating. Donors can "Give with Confidence" to this charity. View this organization's historical ratings on our legacy website.

This score is calculated from two sub-scores:

This score represents Form 990 data from 2019, the latest year published by the IRS.


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Star Rated Report

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Program Expense

Program Expense Ratio

79.9%


The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s).


This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Administrative Expenses

12.2%


As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Fundraising Expenses

7.8%


This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Liabilities to Assets Ratio

0.4%


The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).


Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.


Source: IRS Form 990

Fundraising Efficiency

$0.05


The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.


Source: IRS Form 990

Working Capital Ratio

3.15 years


Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.


Source: IRS Form 990

Program Expense Growth

6.43%


We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.


Source: IRS Form 990

Governance


Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.


Sources Include: IRS Form 990

Governance:
Independent Voting Board Members
No Material Diversion of Assets
Audited Financials Prepared by Independent Accountant
Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties
Documents Board Meeting Minutes
Distributes 990 to Board Before Filing
Compensates Board

Policies


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.


Sources Include: IRS Form 990 and organization's website

Policies:
Conflict of Interest
Whistleblower
Records Retention and Destruction
CEO Compensation Process
Donor Privacy

Transparency


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.


Sources Include: IRS Form 990 and organization's website

Transparency:
CEO Salary Listed on 990
Board of Directors Listed on Website
Key Staff Listed on Website
Audited Financial Statements on Website
Form 990 Available on Website

Additional Information

Unscored

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Total Revenue and Expenses

Total Revenue and Expenses

This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.

Salary of Key Persons

Presented here are up to five of this organization's highest compensated employees. This compensation data includes salary, cash bonuses, and expense accounts and is displayed exactly how it is reported to the IRS. The amounts include salary, cash bonuses, and expense accounts. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. Read the IRS policies for compensation reporting



DEBORAH YOBS, PRESIDENT/EX

$111,457


BRIAN APPLEBY, BOARD MEMBER

$0


TREVOR BAIERL, BOARD MEMBER

$0


CHARLES CASH, BOARD MEMBER

$0


PAMELA FEAR, BOARD MEMBER

$0


Source: IRS Form 990 (page 7), filing year 2019

Business Master File Data

Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website


Activities:

Scientific research (diseases) (BMF activity code: 161)

Other health services (BMF activity code: 179)


Foundation Status:

Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi) (BMF foundation code: 15)


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). (BMF affiliation code: 3)

Data Sources: IRS Forms 990

The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).

Pandemic Response

This organization was impacted by COVID-19 in a way that affected their financial health in 2020. This normally would have reduced their star rating. Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them, and doing this pauses our revision of their rating for six months. Charities may submit their own pandemic responses through their nonprofit portal.


Creutzfeldt-Jakob Disease Foundation reported being impacted by COVID-19 in the following ways:
  • Program Delivery


How COVID-19 impacted the organization's operations financially:

We were able to conduct our annual fundraisers virtually.


How COVID-19 impacted the organization's delivery of programs:

We converted our annual conference to a virtual conference, which was well attended.


How this organization adapted to changing conditions caused by COVID-19:

Our team was already equipped to work remotely so operations were essentially unaffected.


Innovations the organization intends to continue permanently after the pandemic:

Some meetings will continue to happen over Zoom.


...   Impact & Results


This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.


Impact & Results Score

Not Currently Scored

Creutzfeldt-Jakob Disease Foundation cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.

Learn more about Impact & Results.

Do you work at Creutzfeldt-Jakob Disease Foundation? Join the waitlist for an updated Impact & Results score.


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Additional Information

Unscored

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Largest Programs

Largest Programs



Creutzfeldt-Jakob Disease Foundation reported its three largest programs on its FY 2019 Form 990 as:


$308,589

Spent in most recent FY

39%

Percent of program expenses


FAMILY SUPPORT AND OTHER PROGRAMS THE CJD FOUNDATION PROVIDES MANY FAMILY SUPPORT PROGRAMS TO ASSIST OUR NATIONWIDE CONSTITUENTS, INCLUDING: HELPLINE SUPPORT, FAMILY CONFERENCE, QUESTIONNAIRE, FAMILY  ... (More)


$385,292

Spent in most recent FY

49%

Percent of program expenses


RESEARCH GRANTS IN 2019, THE CJD FOUNDATION AWARDED 348,685 IN GRANTS TO 7 RESEARCHERS SELECTED BY OUR SCIENTIFIC ADVISORY COMMITTEE, WHICH COMPRISES INTERNATIONAL PRION DISEASE EXPERTS. 40 RESEARCHER ... (More)


$46,819

Spent in most recent FY

6%

Percent of program expenses


MEDICAL EDUCATION PROGRAMS THE CJD FOUNDATION HOSTS GRAND ROUND PRESENTATIONS, INFECTION CONTROL SEMINARS, AND FUNERAL EDUCATION AROUND THE COUNTRY, AT NO CHARGE. OUR MEDICAL EDUCATION PROGRAMS ARE IN ... (More)


...   Leadership & Adaptability


This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.


Leadership & Adaptability Score

100

out of 100

The score earned by Creutzfeldt-Jakob Disease Foundation is a passing score.

Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.


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Leadership & Adaptability Report

100

of 100 points (BETA)

Mission

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s mission


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.


Source: Nonprofit submitted responses

Vision

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.


Our vision is a world without Prion Disease.


Source: Nonprofit submitted responses

Strategic Goals

The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.


Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.

Goal One: Advance Prion Disease/CJD research


Goal Type: Grow, expand, scale or increase access to the existing programs and services.

Goal Two: Support and inform families affected by Prion Disease/CJD


Goal Type: Grow, expand, scale or increase access to the existing programs and services.

Goal Three: Raise awareness among the medical community, care providers, and families about diagnositics, caregiving practices, information sources, and programs.


Source: Nonprofit submitted responses

Leadership Development

The nonprofit provides evidence of investment in leadership development


Describe an investment in leadership

Organization leaders receive training in related topics through programs offered by the NIH, vendors, and other sources

Source: Nonprofit submitted responses

Mobilizing for Mission

The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.


This organization mobilizes for mission in the following ways:
  • Strategic Partnerships

  • Networks of Collective Impact Efforts

  • Thought Leadership

  • Raising Awareness

  • Policy Advocacy

What are this organization’s external mobilizaton efforts?

CJD Foundation provides regular programs such as teleconferences and forums to educate affected families. The CJD Foundation's Annual Conference brings together international leaders in the Prion field with patient families. Regular advocacy efforts educate policy-makers about health risks and disease impact to encourage continued attention to those issues.

Source: Nonprofit submitted responses

Story of Adaptability

The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.


During the past year, the CJD Foundation quickly adapted its activities from in-person events, programs, and fundraisers to virtual programs. Team members led support groups, family education programs, and Helpline responses from their virtual locations. The annual CJD Foundation Family Conference was held virtually over a period of months, and each program received substantial live views and online views. Caregiving and Bereavement support groups were launched and well received. Advocacy activities involved even more family members than usual, since participants were not required to travel. The Strides for CJD event, while virtual, raised approximately $500,000 and engaged hundreds of participants who walked in their communities, wore Strides T-shirts, competed in fundraising and photo competitions, and posted photos on social media. More than half million dollars in grants were awarded to top-rated researchers internationally. All programs were well received.

Source: Nonprofit submitted responses

...   Culture & Community


This score provides an assessment of the organization's engagement with the constituents it serves, a practice we term Constituent Feedback. When organizations listen to constituents, they are able to better deliver on programs and meet the needs of stakeholders. A future version of this Beacon will also assess an organization's people operations and its Diversity, Equity and Inclusion (DEI) metrics.


Culture & Community Score
BETA

Not Currently Scored

Creutzfeldt-Jakob Disease Foundation is currently not eligible for a Culture & Community score because we have not received its Constituent Feedback data. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.


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Culture & Community Report

Not Scored

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Constituent Feedback

Constituent Feedback


Constituent Feedback and Listening Practice data are not available for this organization. Nonprofit organizations are encouraged to fill out the How We Listen section of their Candid profile. This data will provide the basis for the initial evaluation of Culture & Community.


Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective. We award every nonprofit that completes the Candid survey full credit for this Beacon, in recognition of their willingness to publicly share this information with the nonprofit and philanthropic communities. Although the data is not evaluated for quality at this time, future iterations of this Beacon will include third party or other data that will serve to validate the information provided by the nonprofit.

Analysis and Research


Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Our partnership with Feedback Labs and Guidestar by Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.


Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.