About NAF

About The National Ataxia Foundation

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.

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

 

NAF Board and Staff

President

William P. Sweeney *

Minneapolis, MN

Vice President

Camille Daglio *

Hattiesburg, MS

Treasurer

Charlene Danielson *

Minnetonka, MN

Secretary

Dave Zilles *

Atlanta, GA

Executive Committee

Joseph DeCrescenzo *

Bear, DE

Sam Kirton *

Fairfax, VA

John Mauro *

Auburn, MA

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

Directors

Michael Cammer

Downington, PA

Harold Crawford

Terry, MS

Cindy DeMint

Yorba Linda, CA

Denise Drake

Kenner, LA

Michael Leader

Hummelstown, PA

Wilson Romero

New Iberia, LA

Greg Rooks

Atlanta, GA

Marilyn Schut Lee

St. Cloud, MN

Julie Schuur

Luverne, MN

* Executive Committee Members
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

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

Joanna Jen, MD, PhD

UCLA School of Medicine
Los Angeles, CA

Bronya Keats, PhD

Bungendore
New South Wales, Australia

Albert La Spada, MD, PhD, FACMG

University of California, San Diego
La Jolla, CA

David Lynch, MD

University of Pennsylvania
Philadelphia, PA

Puneet Opal, MD, PhD

Northwestern University Feinberg School of Medicine
Chicago, IL

Gülin Öz, PhD

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

Massimo Pandolfo, MD

Universite Libre de Bruxelles-Hopital
Bruxelles Belgium

Henry Paulson, MD, PhD

University of Michigan Medical Center
Ann Arbor, MI

Christopher Pearson, PhD

The Hospital for Sick Children
Toronto, Ontario

Stefan Pulst, MD

University of Utah Health Sciences Center
Salt Lake City, Utah

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

Huda Zoghbi, MD

Baylor College of Medicine
Houston, TX

Executive Director

Joel Sutherland

joel@ataxia.org

Patient and Research Services Director

Sue Hagen

susan@ataxia.org

Community Program and Service Director

Lori Shogren

lori@ataxia.org

Director of Operations

Julie Braun-Mahler

julie@ataxia.org

Communications Manager

Stephanie Lucas

stephanie@ataxia.org

Office Assistant

Jan Stewart

jan@ataxia.org