Overview
What is International Foundation For Cdkl5 Research?
The International Foundation For Cdkl5 Research is a nonprofit organization, located in Wadsworth, Ohio. Its primary mission is to fund research aimed at discovering a cure for CDKL5, a rare genetic disorder. They achieve this goal by receiving contributions from various sources, including individuals, corporations, and foundations. These funds are then utilized to grant money for research, aiming to improve the quality of life for children affected by CDKL5. Additionally, the organization hosts a family conference every two years to provide support and resources to families impacted by this disorder. Their efforts are dedicated to finding a cure and enhancing the lives of those affected by CDKL5.
Official website here: www.cdkl5.com
What are the reviews and ratings of this charity?
Charity Navigator Rating: 84%, Three-Star out of Four Star rating
The International Foundation for CDKL5 Research (IFCR) has achieved a Three-Star rating with an overall score of 84%. This score reflects a strong commitment to accountability and finance, with a particularly high program expense ratio of 98.87%. The organization also benefits from an independent board and robust governance policies, ensuring that a significant portion of funds directly supports their mission to advance research and provide resources for families affected by CDKL5 Deficiency Disorder.
User feedback highlights the invaluable support that IFCR offers to families navigating the challenges of CDKL5. Many reviews emphasize the organization's comprehensive resources, which help families understand the disorder and connect with a supportive community. Reviewers have expressed deep gratitude for the foundation's ongoing research efforts and advocacy, noting that IFCR provides hope for better treatments and quality of life for their loved ones.
While the organization displays numerous strengths, including a strong financial management track record, user feedback primarily focuses on its positive impact in the community. The cultural and community score, sitting lower at 75, may suggest areas for growth in engaging with a broader audience or enhancing community outreach efforts. Nonetheless, the overall sentiment among users is overwhelmingly positive, reinforcing the IFCR's role as a pivotal resource for those affected by CDKL5 Deficiency Disorder.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
What do the Facebook reviews say about International Foundation For Cdkl5 Research?
98% of 26 reviewers on Facebook recommend this charity. Here is a summary of their reviews:
The enthusiasm for the International Foundation for CDKL5 Research is evident, with many expressing gratitude for the organization's dedication to funding research aimed at finding a cure for CDKL5 Disorder. Many reviewers appreciate the kindness and helpfulness of the team members, indicating a positive experience in their interactions with the organization.
Overall, the feedback highlights a strong sense of community and support fostered by the foundation. Users feel optimistic about the ongoing efforts and the impact the organization is making in the realm of research and patient advocacy. The commitment to its mission resonates well with those affected by CDKL5 Disorder.
This AI summary has been generated from reviews found on Facebook.
Is International Foundation For Cdkl5 Research legitimate?
International Foundation For Cdkl5 Research is a legitimate nonprofit organization registered as a 501(c)(3) entity. International Foundation For Cdkl5 Research 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: $0
Professional Fundraising Fees: $0
Other Salaries and Wages: $0
For more financial information, click here
Official website here: www.cdkl5.com
What is the mission statement of International Foundation For Cdkl5 Research?
The International Foundation for CDKL5 Research is committed to funding research with the ultimate goal of discovering a cure for CDKL5, a rare genetic disorder. To achieve this, they organize a family conference every two years, offering support to families affected by this condition. Their mission also encompasses funding studies to enhance the quality of life for children with CDKL5 and conducting tests to identify potential neurologic modifiers. Through various fundraisers and contributions from individuals, corporations, and foundations, they were able to grant a substantial sum of $574,624 in 2022 to further their research endeavors.
Official website here: www.cdkl5.com
Who is the CEO of International Foundation For Cdkl5 Research?
Amanda Jaksha is the President of International Foundation For Cdkl5 Research.
Official website here: www.cdkl5.com
What is the revenue of International Foundation For Cdkl5 Research?
International Foundation For Cdkl5 Research's revenue in 2022 was $606,589.
Official website here: www.cdkl5.com
Who are the executives of International Foundation For Cdkl5 Research and what are their salaries?
There 12 volunteers at International Foundation For Cdkl5 Research.
Here are 8 key members and their salaries:
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Official website here: www.cdkl5.com
Where can I find the form 990 for International Foundation For Cdkl5 Research?
International Foundation For Cdkl5 Research's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.cdkl5.com
Learn more at the official website: www.cdkl5.com
Mission Statement of International Foundation For Cdkl5 Research
The International Foundation For Cdkl5 Research is dedicated to funding research with the ultimate goal of discovering a cure for CDKL5, a rare and debilitating genetic disorder. Recognizing the profound impact this condition has on affected families, the organization also funds a family conference every two years to offer support and solidarity to those whose loved ones are living with CDKL5. Through various fundraising activities and generous contributions from individuals, corporations, and foundations, the Foundation was able to allocate grants totaling $574,624 in 2022 to support research aimed at finding a cure. Additionally, the organization seeks to enhance the quality of life for children with CDKL5 and explore potential neurologic modifiers through scientific studies.
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Impact
July, 2024
International Foundation For CDKL5 Research has made a significant impact by funding research aimed at finding a cure for CDKL5, a rare genetic disorder. Through various fundraisers and donations from individuals, corporations, and foundations, the organization was able to award grants totaling $574,624 in 2022. These funds support research that will lead to a cure for this debilitating disease in the near future. Additionally, the organization provides support to families affected by CDKL5 by funding a family conference every two years. Their goals include aggressive research, studies to enhance the quality of life for children with CDKL5, and testing of compounds to identify neurologic modifiers.
This information is meant to be a general summary of International Foundation For Cdkl5 Research. 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: $574
- Gross Receipts: $634,813
Assets and Liabilities:
- Total Assets: $631,046
- Total Liabilities: $312,257
- Net Assets: $318,789
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Organization Details
Founding Year
2009
Phone
(970) 576-2740Principal Officer
Amanda Jaksha
Main Address
P O Box 926, Wadsworth, OH, 44282
Website
www.cdkl5.comNTEE Category
Code: T30 - Philanthropy
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