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NAF announces selections for first round of Ataxia Centers of Excellence. LEARN MORE!

National Ataxia Foundation

2023 AAC

About NAF

Serving the Ataxia community since 1957.

Our Vision

A world without Ataxia.

Our Mission

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

Ensuring that no one experience Ataxia alone, until no one experiences Ataxia, period.

About NAF

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.

The National Ataxia Foundation (NAF) was established in 1957 to help persons with Ataxia and their families. Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia. NAF’s vision of a world without Ataxia will be accomplished through our 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. We work closely with the world’s leading Ataxia researchers and clinicians, 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. 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.

A Membership Organization

Join us as a member today – for FREE! 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 Members

Our Work in Action

Annual Reports

Media Information

If you are a member of the press or preparing for an interview with the press, view our media page for more information.

Board of Directors

Executive Committee


Sam Kirton 
Fairfax, VA

Vice President

Linda Snider-Sidwell, MD
Omaha, NE


Greg Rooks 
Atlanta, GA


John Mauro
Auburn, MA

Executive Committee

David Brunnert 
Houston, TX


Michael Cammer
Downington, PA

Cindy DeMint
Yorba Linda, CA

John Dwyer
Minneapolis, MN

Serena Hung, MD
Watertown, MA

Jim Keene
Atherton, CA

Greg Klassen
Boulder, CO

Denise Kolpack
Fargo, ND

Ann Riley
Washington, DC

Ex-Officio Board Members

Harry T. Orr, PhD
Minneapolis, MN

Vikram Shakkottai, MD, PhD
Dallas, TX

Susan Perlman, MD
Los Angeles, CA

Laura Ranum, PhD
Gainesville, FL

Liana S. Rosenthal, MD, PhD
Baltimore, MD

Larry Schut, MD
Maple Lake, MN

Board Member Emeritus

Camille Daglio 
Hattiesburg, MS


Listed by department.

Management & Operations

Executive Director

Andrew Rosen


Kyle Billadeau


Alyssa Willson

Research Services

Chief Scientific Officer

Lauren Moore, PhD

Patient Engagement Manager

Celeste Suart, PhD

Clinical Services Manager

Kelsey Trace

Clinical Services Coordinator

Beth Bowerman

Research Services Assistant

Aimee Alcott

Research Services Associate

Mary Ann Peterson

Programs, Support Groups, Advocacy

Community Program and Services Director

Lori Shogren

Program Coordinator 

Sarah Pilato


Development Director

Joel Sutherland

Development Manager

Jon Wegman

Regional Development Manager

Rachel Hersh

Database Manager/ Development Associate

Meg Hanna


Communications Director

Stephanie Lucas

Communications Coordinator

Mollie Utting

Social Media Coordinator

Tanoa Thomé

Medical & 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

Matthew Burns, MD, PhD
University of Florida
Gainesville, FL

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

Contact Information

Mailing Address

PO Box 27986
Golden Valley, MN 55427

Physical Address

600 Highway 169 South
Suite 1725
Minneapolis, MN 55426


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National Ataxia Foundation

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  • News and research opportunities about your specific type of Ataxia as they become available
  • Early access to free webinars
  • eNewsletter and Generations publications