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!

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


William P. Sweeney *
Minneapolis, MN

Vice President

Camille Daglio *
Hattiesburg, MS


Charlene Danielson *
Minnetonka, MN


Charlene Danielson *
Minnetonka, MN

Executive Committee

David Brunnert *
Houston, TX

Sam Kirton *
Fairfax, VA

John Mauro*
Auburn, MA

Greg Rooks*
Atlanta, GA

* 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


Joseph DeCrescenzo
Bear, DE

Michael Cammer
Downington, PA

Harold Crawford
Terry, MS

Cindy DeMint
Yorba Linda, CA

Michael Leader
Hershey, PA

Wilson Romero
New Iberia, LA

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

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
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

NAF Staff

Executive Director

Andrew Rosen

Development Director

Joel Sutherland

Patient and Research Services Director

Community Program and Services Director

Lori Shogren

Communications Manager

Stephanie Lucas

Development Associate

Jon Wegman

Communications Coordinator

Mollie Utting

Finance Associate

Nick Gullickson

Research Assistant

Mary Ann Peterson

Research Associate

Kelsey Trace

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
763-553-0167 (Fax)