National Ataxia Foundation Incorporated

Increased awareness about hereditary and sporadic ataxia disorders is promoted through a variety of education programs and materials for ataxia families, researchers, physicians, allied health professionals, government agencies, legislative officials and the general public. The Foundation publishes Generations, an annual newsletter and a monthly e-newsletter devoted to ataxia related articles including the latest research and other information beneficial to individuals with ataxia. The Foundation also offers several webinars throughout the year on current topics relevant to the ataxia community. Other educational materials, such as books, videos and fact sheets are provided to persons with ataxia, family members and health care professionals on a "direct request" basis through the NAF office. The Foundation's advocacy activities, such as Hill Days, serve to raise awareness about ataxia and policy issues impacting the ataxia community. The annual ataxia conference, and sponsorship and/or participation in national and international meetings, symposiums and seminars also serve to increase ataxia awareness.The National Ataxia Foundation attempts to locate people and families with hereditary and sporadic ataxia in order to provide them with information about ataxia. This is accomplished by providing updated information about ataxia to the general public by maintaining a website, social media channels, newsletters, and webinars. The Foundation assists individuals and families by identifying clinical resources and making appropriate referrals for neurological care, genetic counseling and gene testing. The Foundation also assists people with locating resources within their own communities, including support groups. The Foundation's network of support groups throughout the country provides families with access to in-person and virtual meeting opportunities.

NAF is committed to funding cutting-edge basic and translational research into hereditary and sporadic ataxia. The goals of NAF's research program are to further elucidate the disease mechanisms of ataxias, bring early-career clinicians and scientists into ataxia research, and help drive the field towards developing treatments and a cure for ataxia. Annual grants are selected through a competitive review process that includes NAF's Medical and Research Advisory Board members and over 80 leading ataxia scientists and clinicians, both domestic and international. Each year NAF awards grants to researchers from domestic and international non-profit and for-profit institutions that directly support basic and translational ataxia research through the following funding mechanisms:1. Pioneer SCA3 Translational Research Awards: Annually granted to outstanding research proposals that aim to make significant advancements in the development of treatments and/or improvements to patient care for Spinocerebellar Ataxia Type 3 (SCA3). Proposals may incorporate other forms of ataxia but must have a predominant focus on SCA3 translational or clinical research. 2. Seed Money Research Grant: Granted primarily as "seed monies" to assist investigators in the early or pilot phase of their studies and as additional support for ongoing investigations on demonstration of need. It is hoped that these studies will be further developed to attract future funding from other sources. 3. Post-doctoral Fellowship Award: Post-doctoral fellowship awards are to serve as a bridge from post-doctoral positions to junior faculty positions. Applicants should have completed at least one year of post-doctoral training, but not more than two at the time of application and should have shown a commitment to research in the field of ataxia. The award will permit individuals to spend an additional third year in a post-doctoral position and increase chances to establish an independent ataxia research program.4. Early Career Investigator Award: The Early Career Investigator Award was created to encourage early career clinical and scientific investigators to pursue a career in the field of ataxia research. 5. Pre-doctoral Fellowship to Promote Diversity in Ataxia Research: Merit-based award intended to enhance research and/or clinical training of promising graduate students from historically underrepresented backgrounds who are matriculated in pre-doctoral or clinical health professional degree training programs and who intend careers as scientists or other clinician-scientists within the field of ataxia. 6. National Ataxia Foundation Graduate Research Fellowship: The National Ataxia Foundation Graduate Research Fellowship is a competitive, non-renewable, merit-based award intended to encourage pre-doctoral students to pursue research and a career in the field of ataxia. 7. NAF Special Grants: Based on the emergent needs of the patient and research community, priority areas of ataxia research may be identified as eligible for specialized grant funding by NAF and may be awarded outside of the annual grant programs. One of these programs is the NAF Ataxia Brain Tissue Donation Program (In Memory of Carol Tate). NAF has partnered with the University of Maryland Brain and Tissue Bank (UMBTB) to relaunch the Ataxia Brain Tissue Donation Program. Brain tissue helps researchers advance our understanding of ataxia and to develop new therapies. NAF finacially supports brain donors from rural and remote communities to donate to the University of Maryland Brain and Tissue Bank.