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

President:

Robert Rauner
Lincoln, Nebraska

Vice President:

Ron Chapleau
Kincardine, Ontario, Canada

Treasurer:

Donna Skwirut
Palos Park, Illinois

Secretary:

Sa Von Rudenick
Minnetonka, Minnesota

Directors:

Joyce Changle
Carnegie, Pennsylvania

Kristie DeMarco
Windham, Maine

Marcie Flores
Joliet, Illinois

Dr. Joseph Hacia
Los Angeles, California

John Kaprich
Ankeny, Iowa

Dr. Stephanie Keller
Atlanta, Georgia

Margaret McIntyre
Chicago, Illinois

Shannon Reed
Biloxi, Mississippi

Marilyn Schmiedel
Pflugerville, Texas

John Wolf
Aloha, Oregon


Medical and scientific advisory board

Chair:

Genevieve Bernard, MD, FRCPC
McGill University
Montreal, Quebec, Canada
View Bio | View Website

Vice Chair:

Ali Fatemi, MD, MBA
Kennedy Krieger Institute
Johns Hopkins Medical Institutions
Baltimore, Maryland
View Bio | View Website

Directors:

Caroline Bergner, MD
University Hospital Leipzig
Leipzig, Germany
View Website

Enrico Bertini, MD
Bambino Gesu’ Children’s Research Hospital
Rome, Italy
View Website

Joshua Bonkowsky, MD, PhD
Primary Children’s Hospital
Salt Lake City, Utah
View Website

Andrea DeBarber, PhD
Oregon Health and Science University
Salt Lake City, Utah
View Website

Marc Engelen, MD, PhD
Amsterdam UMC
Amsterdam, The Netherlands
View Website

Stephan Kemp, PhD
Amsterdam UMC
Amsterdam, The Netherlands
View Website

Troy Lund, MSMS, FAAP, MD, PhD
University of Minnesota
Minneapolis, Minnesota
View Website

Gustavo H. B. Maegawa, MD, PhD, FACMG
Columbia University Irving Medical Center
New York, New York
View Website

Patricia L Musolino MD, PhD
Massachusetts General Hospital
Harvard Medical School
Boston, Massachusetts
View Website

Deborah Renaud, MD
Mayo Clinic
Rochester, Minnesota
View Website

Davide Tonduti, MD, PhD
V. Buzzi Children’s Hospital
Milano, Italy
View Website

Keith Van Haren, MD
Stanford University Medical Center
Palo Alto, California
View Website

Adeline Vanderver, MD
Children’s Hospital of Philadelphia
Philadelphia, Pennsylvania
View Website

Nicole I. Wolf, MD, PhD
Amsterdam UMC
Amsterdam, The Netherlands
View Website


Staff

Chris Rice, Executive Director
chrisrice@ulf.org

Keely Mata, Director of Operations
keely@ulf.org

Tara Nuñez, Operations Assistant
tara@ulf.org

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