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About NAF

Our Mission

To accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.

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 Leadership

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

Devin Cobb
Naperville, IL

Cindy DeMint
Yorba Linda, CA

Jim Keene
Atherton, CA

Greg Klassen
Elkridge, MD

Lauren Moore
Chicago, IL

Greg Rooks
Atlanta, GA

Wilson Romero
New Iberia, LA

Peter Schnobrich
Minneapolis, MN

Ex Officio Board Members

Harry T. Orr, PhD
Minneapolis, MN

Susan Perlman, MD
Los Angeles, CA

Laura Ranum, PhD
Gainesville, FL

Liana Rosenthal, MD
Baltimore, MD

Larry Schut, MD
Maple Lake, MN

Vikram Shakkottai, MD, PhD
Dallas, TX

Board Member Emeritus

Charlene Danielson 
Minnetonka, MN

Joe DeCrescenzo
Bear, DE

Mike Leader
Hershey, PA

Bill Sweeney
Minneapolis, MN

Medical and Research Advisory Board

Chair of MRAB

Vikram Shakkottai, MD, PhD
University of Texas Southwestern
Dallas, TX

Research Director

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

Medical Director

Liana Rosenthal, MD
Johns Hopkins University
Baltimore, MD

MRAB Members

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

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

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

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

Susan Perlman, MD
UCLA Neurological Services
Los Angeles, CA

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

Finance Director

Kyle Billadeau
finance@ataxia.org

Development Director

Joel Sutherland
joel@ataxia.org

Development Associate

Jon Wegman
jon@ataxia.org

Research Services Director

Sue Hagen
susan@ataxia.org

Research Services Manager

Kelsey Trace
kelsey@ataxia.org

Research Services Associate

Mary Ann Peterson
mary@ataxia.org

Research Services Coordinator

Beth Bowerman
beth@ataxia.org

Community Program and Services Director

Lori Shogren
lori@ataxia.org

Communications Manager

Stephanie Lucas
stephanie@ataxia.org

Communications Coordinator

Mollie Utting
mollie@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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