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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

Ataxia is a rare neurological disease affecting tens of thousands of people in the US and many thousands more around the world. It is progressive, affecting a person’s ability to walk, talk, and use fine motor skills. Founded in 1957, NAF is a Minneapolis-based nonprofit organization established to help persons with Ataxia and their families. The Foundation’s vision of a world without Ataxia will be accomplished through its primary programs of funding Ataxia research, providing vital programs and services for Ataxia families, and partnering with pharmaceutical companies in the search for treatments and a cure. 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

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 S. Rosenthal, MD, PhD
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 S. Rosenthal, MD, PhD
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, MD, PhD
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, PhD
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, FAAN, FANA, FANPA
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

Chief Scientific Officer

Lauren Moore
lauren@ataxia.org

Research Services Director

Sue Hagen
susan@ataxia.org

Finance Director

Kyle Billadeau
finance@ataxia.org

Development Director

Joel Sutherland
joel@ataxia.org

Community Program and Services Director

Lori Shogren
lori@ataxia.org

Communications Director

Stephanie Lucas
stephanie@ataxia.org

Research Services Manager

Kelsey Trace
kelsey@ataxia.org

Development Manager

Jon Wegman
jon@ataxia.org

Research Services Coordinator

Beth Bowerman
beth@ataxia.org

Program Coordinator

Sarah Pilato
sarah@ataxia.org

Communications Coordinator

Mollie Utting
mollie@ataxia.org

Research Services Associate

Mary Ann Peterson
mary@ataxia.org

Contact Information

Mailing Address

PO Box 27986
Golden Valley, MN 55427

Physical Address

600 Highway 169 South
Suite 1725
Minneapolis, MN 55426

Fax:
763-553-0167

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