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The Board of Directors works very closely with the Medical and Scientific Advisory Board to support the needs of the ULF and the leukodystrophy community.

Board of Directors


Robert Rauner
Lincoln, Nebraska

Vice President:

Ron Chapleau
Kincardine, Ontario, Canada


Alan Fingeroot
Bellevue, Washington


Margaret Halter
Mansfield, Ohio


Anne Brendel
Reno, Nevada

Joyce Changle
Carnegie, Pennsylvania

Kristie DeMarco
Windham, Maine

Dr. Joseph Hacia
Los Angeles, California

Dr. Stephanie Keller
Atlanta, Georgia

Sa Von Rudenick
Minnetonka, Minnesota

Donna Skwirut
Palos Park, Illinois

John Wolf
Aloha, Oregon

Medical and scientific advisory board


Dr. Genevieve Bernard, MD, FRCPC
Montreal, Quebec, Canada
View Bio | View Website

Vice Chairman:

Ali Fatemi, MD, MBA
Baltimore, Maryland
View Bio | View Website


Joshua Bonkowski, MD, PhD
Salt Lake City, Utah
View Website

Andrea DeBarber, PhD
Salt Lake City, Utah
View Website

Florian Eichler, MD
Boston, Massachusetts
View Website

Marc Engelen, PhD
Amsterdam, The Netherlands
View Website

Stephan Kemp, PhD
Amsterdam, The Netherlands
View Website

Troy Lund, MD, PhD
Minneapolis, Minnesota
View Website

Deborah Renaud, MD
Rochester, Minnesota
View Website

Wolfgang Koehler, MD
Leipzig, Germany
View Website

Davide Tonduti, MD, PhD
Milano, Italy
View Website

Keith Van Haren, MD
Palo Alto, California
View Website

Adeline Vanderver, MD
Philadelphia, Pennsylvania
View Website


Chris Rice, Executive Director

Keely Haag, Director of Operations

Tara Nuñez, Operations Assistant

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