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About NAF

About NAF

The National Ataxia Foundation is dedicated to improving the lives of persons affected by Ataxia through support, education, and research.

Supporting Promising Ataxia Research Since 1957

NAF is a membership supported nonprofit organization established in 1957 to help persons with Ataxia and their families. The Foundation’s primary purpose is to support Ataxia research, provide vital programs and services for Ataxia families, and help in the search for a cure. NAF is the only organization in the United States dedicated to the disease that serves all types of Ataxia. NAF works closely with the world’s leading Ataxia researchers, promoting exchanges of ideas and innovation in Ataxia discovery.

NAF Origins

NAF began with a single doctor’s quest to find the cause and cure for Ataxia. John W. Schut, MD founded the National Ataxia Foundation to relentlessly pursue answers after he lost family members to the disease. Eventually inheriting the disease and succumbing himself, his dream lived on as NAF’s efforts to fund research increased – leading to some of the most important Ataxia discoveries. Today, NAF is guided by the world’s most renowned Ataxia scientists.

Connecting the Ataxia Community

NAF offers many educational resources for Ataxia, including a comprehensive library of brochures, fact sheets, and books. NAF also publishes Generations, a quarterly magazine centered around Ataxia and families affected. NAF also provides a number of ways for the Ataxia community to connect, such as: NAF Support Groups, a Facebook Ataxia Support Group, various Ataxia events, medical expos, and most importantly, the Annual Ataxia Conference – a three-day conference designed for Ataxia experts and Ataxia families to come together.

 

Need More Information?

To request information, please contact us here or by postal mail:
National Ataxia Foundation
600 Highway 169 South
Suite 1725
Minneapolis, MN 55426
763-553-0020
763-553-0167 (Fax)

NAF Board & Staff

Board Of Directors

President

William P. Sweeney *
Minneapolis, MN

Vice President

Camille Daglio *
Hattiesburg, MS

Treasurer

Charlene Danielson *
Minnetonka, MN

Secretary

Charlene Danielson *
Minnetonka, MN

Executive Committee

Joseph DeCrescenzo *
Bear, DE

Sam Kirton *
Fairfax, VA

Michael Leader*
Downington, PA

John Mauro*
Auburn, MA

* Executive Committee Members

Medical Liaison

Lawrence Schut, MD
Maple Lake, MN

Research Director

Harry T. Orr, PhD
University of Minnesota
Minneapolis, MN

Medical Director

Susan Perlman, MD

Los Angeles, CA

Associate Research Director

Laura Ranum, PhD
University of Florida, College of Medicine
Gainesville, FL

Directors

David Brunnert
Houston, TX

Michael Cammer
Downington, PA

Harold Crawford
Terry, MS

Cindy DeMint
Yorba Linda, CA

Wilson Romero
New Iberia, LA

Greg Rooks
Atlanta, GA

Marilyn Schut Lee
St. Cloud, MN

Linda Snider, MD
Omaha, NE

Dave Zilles
Atlanta, GA

Board Member Emeritus

Julie Schuur
Luverne, MN

Medical Research Advisory Board

Research Director

Harry T. Orr, PhD
Director of Institute for Translational
Neuroscience Tulloch Professor of Genetics
University of Minnesota
Minneapolis, MN

Associate Research Director

Laura Ranum, PhD
Professor of Molecular Genetics and Microbiology Director, Center for Gene Discovery and Neurological Disease
University of Florida, College of Medicine
Gainesville, FL

Medical Director

Susan Perlman, MD
Clinical Professor, UCLA Neurological Services
David Geffen School of Medicine
Los Angeles, CA

Medical Liaison

Lawrence Schut, MD
Maple Lake, MN

Tetsuo Ashizawa, MD, FAAN
Methodist Hospital Research Institute
Houston, TX

Khalaf Bushara, MD, MRCP
University of Minnesota
Minneapolis, MN

Beverly Davidson, PhD
Children’s Hospital of Philadelphia
Philadelphia, PA

Brent L. Fogel, MD, PhD
David Geffen School of Medicine
University of California, Los Angeles
Los Angeles, CA

Christopher M. Gomez, MD, PhD
University of Chicago
Chicago, IL

Sheng Han Kuo, MD
Columbia University
New York City, NY

Albert La Spada, MD, PhD, FACMG
Duke University
Durham, NC

David Lynch
University of Pennsylvania
Philadelphia, PA

Puneet Opal, MD, PhD
Northwestern University Feinberg School of Medicine
Chicago, IL

Gülin Öz
Center for Magnetic Resonance Research,
University of Minnesota
Minneapolis, MN

Henry Paulson, MD, PhD
University of Michigan Medical Center
Ann Arbor, MI

Stefan Pulst, MD
University of Utah Health Sciences Center
Salt Lake City, Utah

Liana Rosenthal, MD
Johns Hopkins University
Baltimore, MD

Jeremy D. Schmahmann, MD
Harvard Medical School
Boston, MA

Vikram Shakkottai, MD, PhD
University of Michigan
Ann Arbor, MI

S.H. Subramony, MD
University of Florida
Gainesville, FL

George “Chip” Wilmot, MD, PhD
Emory University
Atlanta, GA

Robert B. Wilson, MD, PhD
University of Pennsylvania
Philadelphia, PA

Staff

Executive Director

Andrew Rosen
andrew@ataxia.org

Development Director

Joel Sutherland
joel@ataxia.org

Patient and Research Services Director

Community Program and Service Director

Lori Shogren
lori@ataxia.org

Communications Manager

Stephanie Lucas
stephanie@ataxia.org

Development Associate

Jon Wegman
jon@ataxia.org

Administrative Coordinator

Mollie Utting
mollie@ataxia.org

Finance Assistant

Nick Gullickson
nick@ataxia.org

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Contribute Today

Community support is vital to the work that NAF does. Our generous donors help us fund promising Ataxia research and offer support services to people with Ataxia. Your gift today will help us continue to deliver on our mission to improve the lives of persons affected by ataxia.

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Become a Member

Join for FREE today! Become a part of the community that is working together to find a cure. As a member you will receive access to the latest ataxia news with our e-newsletter and Generations publication.