National Ataxia Foundation Incorporated
Programs
Ataxia Patient Education and Support
The National Ataxia Foundation offers patient education, advocacy, and support programs to improve the lives of those living with Ataxia. NAF's patient education program provides an annual conference, webinars, and fact sheets to help individuals manage their health and quality of life. NAF's advocacy program involves policy makers and pharmaceutical companies to grow awareness of Ataxia, accelerate drug development and ensure access to care and treatment services. NAF's support group program offers a way for the Ataxia community to connect and learn from others.GeographiesNot indicatedDatesJan 1, 2022 – Dec 31, 2022Source990No causes providedNo populations provided–$583.2KAtaxia Research Funding Programs
The National Ataxia Foundation (NAF) encourages and promotes research on hereditary and sporadic ataxias through three research funding programs: (1) "seed money" research grants; (2) post doc fellowship awards; and (3) young investigator awards. Peer review is provided by NAF's Medical and Research Advisory Board members and leading ataxia scientists and clinicians, both domestic and international. The goals of NAF's research program are to further elucidate the disease mechanism of ataxia, bring early-career clinicians and scientists into ataxia research and move the field toward developing treatments and a cure for ataxia. In addition, NAF funds three programs that are beyond the traditional grant funding mechanism. These are non-competitive programs which include the Brain Tissue Donation Program, the Centralized Ataxia Genomic Core and Clinical Research Consortium for the Study of Cerebellar Ataxia. Because of the importance of collaboration among the multi-stakeholders for ataxia research, the Foundation organizes scientific meetings.GeographiesNot indicatedDatesJan 1, 2022 – Dec 31, 2022Source990No causes providedNo populations provided–$1.8MNAF Drug Development Collaborative
The NAF Drug Development Collaborative is a pre-competitive pharmaceutical industry consortium with a principal goal of accelerating the development of treatments for Ataxia. The group will address the many shared opportunities and challenges in therapy development for this complex neurological disease. The Collaborative provides a centralized source for access to resources needed to support research and development of Ataxia therapies. Members will benefit from the integration of the patient experience with sound Ataxia scientific and clinical expertise. NAF brings more than 60 years of experience in supporting patients and caregivers and connecting them with research and clinical trial opportunities. NAF has also funded a network of Ataxia clinicians at sites around the US that will be a critical component of the Collaborative's work. Specific objectives of the Collaborative include natural history and bio sample data collection, development of biomarkers, validation of rating scales, clinical trial design, patient-reported outcomes, and other data necessary for the development and approval of safe and effective therapies. There were ten members of the Collaborative at the end of 2022.GeographiesNot indicatedDatesJan 1, 2022 – Dec 31, 2022Source990No causes providedNo populations provided–$943.9K
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