Organizations Filed Purposes:
The National Ataxia Foundation is dedicated to improving the lives of persons affected by ataxia through support, education and research.
Education, research and awareness of ataxia.
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 and the general public. The Foundation publishes 'Generations', a quarterly newsletter devoted to ataxia related articles, including the latest research and other information beneficial to individuals with ataxia. 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 annual membership meeting, and sponsorship an/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, creating public service announcements and publishing 'Generations'. 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 National Ataxia Foundation encourages and promotes research on hereditary and sporadic ataxias through three research funding programs: (1) ataxia "seed money" for research grants; (2) ataxia fellowship awards;, and (3) ataxia young investigator awards. In addition, due to an anonymous donor, the Foundation was able to establish two additional research programs in 2011, the pioneer SCA Translational Research Award: one year $100,000 grants focusing on research investigations that will facilitate the development of treatments for the Spinocerebellar Ataxias (SCAs) and the Young Investigator (YI-SCA) Award for SCA Research: one year grants of $50,000 awarded to encourage young investigators to pursue a career in spinocerebellar ataxia (SCA) research. The Foundation grants funds for new and innovative research projects which have the potential to expand into major, multi-disciplinary research programs supported by government or private agencies. In addition, the Foundation helps to coordinate research efforts into the causes and early detection of ataxia through existing research centers throughout the world and supports scientific conferences on the ataxias.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
Name | Title | Hours Per Week | Total Salary |
Joel Sutherland | Development Director | 40 | $131,035 |
Andrew Rosen | Executive Director | 40 | $107,338 |
Dave Zilles | Board Member | 2 | $0 |
Julie Schuur | Board Member Emeritus | 2 | $0 |
David Brunnert | Board Member | 2 | $0 |
Linda Snider Md | Board Member | 2 | $0 |
Michael Cammer | Board Member | 2 | $0 |
Cindy Demint | Board Member | 2 | $0 |
Michael Leader | Board Member | 2 | $0 |
Marilyn Schut Lee | Board Member | 2 | $0 |
Wilson Romero | Board Member | 2 | $0 |
Greg Rooks | Board Member | 2 | $0 |
John Mauro | Board Member | 2 | $0 |
Sam Kirton | Board Member | 2 | $0 |
Joseph Decrescenzo | Board Member | 2 | $0 |
Harold Crawford | Board Member | 2 | $0 |
Laura Ranum | Associate Research Directo | 2 | $0 |
Susan Perlman | Medical Director | 2 | $0 |
Harry Orr | Research Director | 2 | $0 |
Lawrence Schut | Medical Liaison | 2 | $0 |
Charlene Danielson | Treasurer/Secretary | 4 | $0 |
Camille Daglio | Vice President | 10 | $0 |
William Sweeney | President | 10 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202002869349301755_public.xml