Overview
What is Creutzfeldt-Jakob Disease Foundation Inc?
Creutzfeldt-Jakob Disease Foundation Inc, based in Akron, Ohio, is a dedicated nonprofit organization that supports families affected by Prion diseases, including Creutzfeldt-Jakob Disease (CJD). Their mission is to raise awareness, fund medical education, and conduct research. They provide various family support programs, such as a helpline, family conferences, questionnaires, workshops, teleconference support groups, webinars, and speaker series. The helpline received nearly 2,000 calls and emails in 2022, offering information and referrals. The annual family conference, attended by over 700 family members, experts, and professionals, provides updates on research, surveillance, treatment, and early diagnosis of CJD. The questionnaire, in collaboration with the National Prion Disease Pathology Surveillance Center, allows families to document symptoms and provides data for doctors and scientists. Additionally, they host teleconference support groups, record interviews with experts, and share information with families, caregivers, medical professionals, and infection control specialists. Their aim is to support, educate, and advocate for families affected by Prion diseases.
Official website here: www.cjdfoundation.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 100%, Four-Star out of Four Star rating from Charity Navigator.
The Creutzfeldt-Jakob Disease Foundation Inc has achieved an impressive Four-Star rating from Charity Navigator, reflecting its strong commitment to accountability and financial management. With a perfect score in both Accountability & Finance and Leadership & Adaptability, the organization demonstrates excellent oversight, independent board governance, and a solid program expense ratio. This rating signifies that the foundation is efficiently using its resources to support its mission of raising awareness and funding research for Creutzfeldt-Jakob Disease.
User feedback highlights the profound impact the foundation has on families affected by this rare and devastating illness. Reviewers have expressed gratitude for the support received, particularly noting the effectiveness of the CJD Hotline and the dedication of founder Florence Kranitz. The organization plays a crucial role by providing resources, guidance, and a platform for collaboration among families, doctors, and researchers, which greatly aids in navigating the challenges posed by this disease.
Despite its strengths, some feedback points to the ongoing struggles the organization faces in garnering mainstream media attention and funding. The rarity of CJD means it often goes unnoticed, and this can hinder the foundation's efforts to raise awareness and secure support. Nevertheless, the commitment to its mission and the positive testimonials from those served underscore the foundation's vital role in the community.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
Is Creutzfeldt-Jakob Disease Foundation Inc legitimate?
Creutzfeldt-Jakob Disease Foundation Inc is a legitimate nonprofit organization registered as a 501(c)(3) entity. Creutzfeldt-Jakob Disease Foundation Inc submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Heare are some key statistics you may want to consider:
Executive Compensation: $111,457
Professional Fundraising Fees: $0
Other Salaries and Wages: $231,744
For more financial information, click here
Official website here: www.cjdfoundation.org
What is the mission statement of Creutzfeldt-Jakob Disease Foundation Inc?
The Creutzfeldt-Jakob Disease Foundation Inc's mission is centered around supporting families affected by prion diseases, raising awareness, and promoting medical education and research. Their primary objectives include providing family support through a helpline, referrals, support groups, and speaker series. They also offer educational resources for families, caregivers, medical professionals, funeral professionals, and infection control specialists. The foundation engages in advocacy with senators and policy makers, organizes an annual family conference, and holds workshops around the country. Additionally, they collaborate with scientists, clinicians, medical centers, health authorities, professional organizations, and international patient communities in their mission to combat this rare, rapidly progressive neurodegenerative disease.
Official website here: www.cjdfoundation.org
Who is the CEO of Creutzfeldt-Jakob Disease Foundation Inc?
Deborah Yobs is the President/Ex of Creutzfeldt-Jakob Disease Foundation Inc.
Official website here: www.cjdfoundation.org
What is the revenue of Creutzfeldt-Jakob Disease Foundation Inc?
Creutzfeldt-Jakob Disease Foundation Inc's revenue in 2022 was $2,861,917.
Official website here: www.cjdfoundation.org
Who are the executives of Creutzfeldt-Jakob Disease Foundation Inc and what are their salaries?
The average compensation at Creutzfeldt-Jakob Disease Foundation Inc during 2022 was $57,200. There are 6 employees and 340 volunteers at Creutzfeldt-Jakob Disease Foundation Inc.
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Official website here: www.cjdfoundation.org
Where can I find the form 990 for Creutzfeldt-Jakob Disease Foundation Inc?
Creutzfeldt-Jakob Disease Foundation Inc's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.cjdfoundation.org
Learn more at the official website: www.cjdfoundation.org
Mission Statement of Creutzfeldt-Jakob Disease Foundation Inc
The Creutzfeldt-Jakob Disease Foundation Inc is committed to supporting families affected by prion diseases, raising awareness, and advancing medical education and research. This nonprofit organization's mission is twofold: firstly, it focuses on providing assistance to families impacted by Creutzfeldt-Jakob Disease (CJD) and other prion diseases. This support encompasses a 7-day helpline, referrals, support groups, and speaker series. Secondly, the Foundation aims to educate various groups, including families, caregivers, medical professionals, funeral professionals, and infection control specialists, about CJD and related prion diseases.
Moreover, the Creutzfeldt-Jakob Disease Foundation Inc is active in advocacy, engaging with senators and public policy makers to advocate for the needs of those affected by prion diseases. The Foundation also organizes an annual family conference, bringing together affected families and prion disease experts, and conducts family workshops around the country. Furthermore, the organization collaborates with scientists, clinicians, medical centers, health authorities, professional organizations, and international patient associations to advance research and improve understanding of prion diseases.
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Impact
July, 2024
The Creutzfeldt-Jakob Disease Foundation Inc impacts families affected by prion disease by providing crucial support and resources. They offer a wide range of family support programs such as helpline support, family conferences, workshops, speaker series, and support groups. In 2022, they responded to nearly 2,000 calls and emails, organized a virtual family conference with over 700 participants, and hosted 30 teleconference support groups. The foundation also collaborates with the National Prion Disease Pathology Surveillance Center to collect data through patient questionnaires, contributing to research efforts. Through these efforts, the foundation plays a vital role in raising awareness, supporting medical education, and funding research related to prion diseases like Creutzfeldt-Jakob Disease.
This information is meant to be a general summary of Creutzfeldt-Jakob Disease Foundation Inc. Please take the time to review official sources before making any decisions based upon the content provided here.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Investment Income: $37,113
- Gross Receipts: $4,541,522
Assets and Liabilities:
- Total Assets: $6,412,924
- Total Liabilities: $66,562
- Net Assets: $6,346,362
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Organization Details
Founding Year
1993
Phone
(800) 659-1991Principal Officer
Deborah Yobs
Main Address
3634 WEST MARKET STREET SUITE 110, AKRON, OH, 44333
Website
www.cjdfoundation.orgNTEE Category
Code: G83 - Disease
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