the Sturge-Weber
foundation
Magazine
Address
The Sturge-Weber Foundation
PO Box 418 • Mt. Freedom, NJ 07970
800 627-5482 • 973 895-4445
973 895-4846 (Fax)
[email protected]
www.sturge-weber.org
Editor
Anne Howard
Graphic Design
Metro Printing – Aurora, CO
Editorial Contributors
Bonnie Ayers
Karen Ball
Johnathan Pevsner, PhD
Charles Swindell, PhD
RO
O TS
TO A CU
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BranchingOut
volume 28 no. 1 April 2014
Table of Contents
3
Board of Directors
Joseph Fisher, Chairman – Randolph, NJ
Robert Wilber, Vice Chair – Franklin, MA
Dan Dorney, Treasurer – Monroe, NY
Jasson W. Gilmore, Secretary – Irvine, CA
Grant Aldrich – Thousand Oaks, CA
Howard Ash – Miami Beach, FL
Pamela McIntyre – North Reading, MA
Karen Ball, President & CEO – The Sturge-Weber Foundation
Honorary Board Members
Linda Larach Cohen – New York, NY
Woody Crouch – Scarsdale, NY
Stan M. Fisher – Bigfork, MT
Roy Geronemus, MD – New York, NY
Joseph Morelli, MD – Aurora, CO
Gerard E. Puorro – Wayland, MA
Melanie Wood – Bellaire, TX
A Message from the CEO by Karen L. Ball
4
Power of Partnerships
5
Rare Disease Day | 2014
6
Cover: Remembering Loved Ones
7
Tribute to Thomas Rohrer, Dinner + Photos
11 Education Forum
12 Development News
13 Route to a Cure Walk
14 Reaching Beyond - A new look at MOA
15 FREE Month of Awareness Poster
Centers of Excellence
UC-Irvine Beckman Laser Institute – Irvine, CA
UCSF Medical Center – San Francisco, CA
Children’s Hospital – Denver, CO
Boston Children’s Hospital – Boston, MA
Children’s Hospital of Michigan - Detroit, MI
NYU Medical Center – New York, NY
Nationwide Children’s Hospital - Columbus, OH
Texas Children’s Hospital – Houston, TX
Thomas Jefferson Univ. Medical Center - Philadelphia, PA
Rady Children’s Hospital – San Diego, CA
Medical Advisory Board
Executive
Committee
Alex Levin, Chair
Tina Alster, MD
Harry Chugani, MD
Roy Geronemus, MD
James Riviello, MD
David Goldberg, MD
2
Consultants
Oon Tian Tan, MD
Jack Arbiser, MD PhD
Ranella Hirsch, MD
Joseph Morelli, MD
Jerome Garden, MD
Robert Ritch, MD
John Mulliken, MD
Lynn Chapieski, PhD
Working Group
Conveners
Michael Gold, MD
Mustafa Sahin, MD
Alex Levin, MD
On the cover: We honor the grandparents who have stood behind their children
through the years. We mourn the precious children who are gone from us too soon.
If you have opinions, questions, or articles for Branching Out, we would like to hear from you.
Please fax, mail, or e-mail your material to the swf office ([email protected]).
We reserve the right to edit all materials.
The SWF is a member of the National Organization for Rare Disorders (NORD),
American Brain Coalition (ABC), The Coalition of Skin Diseases (CSD),
and the Association for Research in Vision and Ophthalmology (ARVO).
Celebrating 25 Years of Compassionate and Professional Service