In Focus is published by:
Foundation Fighting Blindness, Inc.
7168 Columbia Gateway Drive
Columbia, MD 21046
Foundation Board of Directors-Officers
David Brint, Chairman
Gordon Gund, Chairman Emeritus
Joel Davis, Vice Chairman, Major Gifts
Eddie Russnow, Vice Chairman, Development
Jonathan Steinberg, MD, Vice Chairman,
Warren Thaler, Vice Chairman, Board
Development & Communications
Haynes Lea, Treasurer
Yvonne Chester, Secretary
Foundation National Management Staff
Benjamin Yerxa, PhD, Chief Executive Officer
Stephen Rose, PhD, Chief Research Officer
Patricia Zilliox, PhD, Chief Drug Development
Valerie Navy-Daniels, Chief Development Officer
Annette Hinkle, CPA, Chief Financial Officer
Patricia Dudley, Chief Human Resources Officer
Foundation In Focus Newsletter Staff
Rhea K. Farberman, Deputy Chief Development
Joanne Zaslow, Associate Director,
Communications and Marketing
Ben A. Shaberman, Director,
Kim Bower, Brand Manager and Graphic
Any products and/or services mentioned within
In Focus are presented as a source of
information and should not be misinterpreted
as a recommendation of the Foundation.
The Foundation has not tested or evaluated
the products reported upon to determine their
safety or effectiveness.
For a copy of this publication, write to
In Focus at the above address, or call
800-683-5555 (TOLL FREE); 800-863-5551
(FOR DEAF). Or visit us at www.FightBlindness.org.
Physicians differ in their approach to incorporating
research results into their clinical practices.
You should always consult with and be guided
by your physician’s advice when considering
treatment based on research results.
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© Foundation Fighting Blindness 2017
Sophia Sees Hope Launches
Newsletter for LCA Families
Sofia Sees Hope will launch a quarterly newsletter in fall 2017. Sophia
Sees Hope funds research for diagnosis, treatments, and cures for rare
retinal diseases and often teams with FFB to provide advocacy and
information for families living with Leber congenital amaurosis (LCA).
The newsletter, specifically for LCA patient families, will help families
connect with each other and with the resources and organizations that
can help them. Both print and digital versions will be offered.
“There used to be a newsletter for LCA families, and it was a wonderful
resource and a great way to stay informed,” said Sofia Sees Hope co-founder Laura Manfre. “When I attend conferences and hear from
families, the number one thing patient families say to me is they miss the
newsletter. I’m happy that Sofia Sees Hope is now in a position to do this.”
The newsletter will include LCA research news, research updates from
the FFB, family stories, fundraisers, an event calendar, and a section
dedicated to education on the patient and family’s role in advancing
To sign up for the newsletter — and other information from Sofia Sees
Hope — please visit http://sofiasees.org/resources/newsletter/.
After paying out of pocket for
our initial genetic tests, we were
delighted to be told that further
testing would be covered by a
research grant made possible
partly because of Foundation
Fighting Blindness. Thank you
for making an impact on the needs of
our daughter. We do believe a cure is in sight.
Keep up the good work!
Megan and John O’Brien
Our Daughter Kelly O'Brien