About NAF

Our Mission

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.

Become a Member of NAF for Free!

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NAF Members

Join us today! As pharmaceutical industry interest in Ataxia continues to grow, our members will play an integral role in moving research forward to get treatments to the market. Our members will be the first to know when there are new opportunities to participate in research or clinical trials for their specific type of Ataxia. Members also receive early access to our free webinars, NAF’s eNewsletters and Generations publications.

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. We provide a number of ways for the Ataxia community to connect, such as: NAF Support Groupsa Facebook Ataxia Support Group, various Ataxia events, medical expos, and most importantly, the Annual Ataxia Conference – a two-day conference designed for Ataxia experts and Ataxia families to come together.

 

Our Work in Action - Annual Reports

NAF Board & Staff

Board Of Directors

President

Sam Kirton 
Fairfax, VA

Vice President

Linda Snider-Sidwell, MD
Omaha, NE

Treasurer

Camille Daglio 
Hattiesburg, MS

Secretary

John Mauro
Auburn, MA

Executive Committee

David Brunnert 
Houston, TX

Directors

Michael Cammer
Downington, PA

Joseph DeCrescenzo
Bear, DE

Cindy DeMint
Yorba Linda, CA

Michael Leader
Hershey, PA

Wilson Romero
New Iberia, LA

Greg Rooks
Atlanta, GA

Peter Schnobrich
Minneapolis, MN

William P. Sweeney 
Minneapolis, MN

Ex Officio Board Member

Harry T. Orr, PhD

Minneapolis, MN

Susan Perlman, MD

Los Angeles, CA

Laura Ranum, PhD
Gainesville, FL

Larry Schut, MD
Maple Lake, MN

Board Member Emeritus

Harold Crawford
Terry, MS

Charlene Danielson 
Minnetonka, MN

Marilyn Schut Lee
St. Cloud, MN

Julie Schuur
Luverne, MN

Dave Zilles
Atlanta, GA

Medical Research Advisory Board

Chair of MRAB

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

Research Director

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

Research Director Elect

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

Medical Director

Susan Perlman, MD
UCLA Neurological Services
Los Angeles, CA

Medical Director Elect

Liana Rosenthal, MD
Johns Hopkins University
Baltimore, MD

MRAB Directors

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

Pravin Khemani, MD
Swedish Neuroscience Institute
Seattle, WA

Albert La Spada, MD, PhD, FACMG
University of California Irvine School of Medicine
Irvine, CA

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

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

Larry Schut, MD
Maple Lake, MN

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

NAF Staff

Executive Director

Andrew Rosen
andrew@ataxia.org

Research Services Director

Development Director

Joel Sutherland
joel@ataxia.org

Community Program and Services Director

Lori Shogren
lori@ataxia.org

Finance Director

Kyle Billadeau
finance@ataxia.org

Research Manager

Kelsey Trace
kelsey@ataxia.org

Communications Manager

Stephanie Lucas
stephanie@ataxia.org

Communications Coordinator

Mollie Utting
mollie@ataxia.org

Research Assistant

Mary Ann Peterson
mary_peterson@ataxia.org

Development Associate

Jon Wegman
jon@ataxia.org

Need More Information?

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