Welcome to the 2016 annual report of the Foundation Fighting
Blindness. As this is the beginning of my tenure as the
Foundation’s chair, having replaced a legend, Gordon Gund, I am
particularly honored to bring you this report. Again this year, we
have exciting news to share.
During its 46-year history, the Foundation, through its
investments, has supported the most promising research on
potential treatments for inherited retinal degenerations being
done across the globe. These investments have enabled a
new level of understanding of how the retina works and what
goes wrong when retinal cells stop working. They have also
led to breakthrough discoveries in the search for cures. The
strongest evidence of these results is the number of potential
therapies moving out of the lab into clinical trials and toward the
marketplace. For example, Spark Therapeutics is seeking
U. S. Food and Drug Administration (FDA) approval for its gene-replacement therapy for a form of Leber congenital amaurosis
(LCA2). This therapy, intended to treat blindness caused by
mutations in the RPE65 gene, has received both breakthrough
therapy and orphan disease product designation by the FDA. If
approved, it could become the first-ever approved gene therapy
for an inherited retinal disease and the first for any inherited
disease in the United States!
The Foundation has continued to pursue strategic goals in 2016
including attracting biotech and pharma companies into the
field and funding research that can be pursued by these entities
once proof of concept is provided. Also important is our focus
on filling the gaps that will encourage pharma and biotech to
pursue retinal disease clinical trials, including locating patient
populations through the My Retina Tracker program, providing
agreed-upon clinical endpoints measures and getting their use
approved by the FDA, and conducting natural history studies
so industry and the FDA can measure treatment progress. Our
ProgStar program for Stargardt is concluding, and a new initiative
in Usher syndrome is beginning. FFB has always been strategic
about the way we deploy funds. Our goal is to maximize the
leverage those funds bring to the field.
I invite you to spend a few minutes reading this report for much
more information about the important advances being made in
retinal disease research — many of them thanks to Foundation
Fighting Blindness funding. There is tremendous reason to be
optimistic about the potential for vision-restoring treatments.
But, as we marvel at the advances the vision science community
has made, we also need to remember there is much more work
to be done. And, in most cases, the most expensive part of the
work — clinical trials and actually moving treatments to the
patients who need them — is still ahead of us.
In short, we have much to be proud of. And lots more work to do,
science to invest in, and money to raise. My pledge to you is that
my colleagues in FFB’s leadership and I will continue to steward
your donation dollars carefully and strategically based on the
guidance of our world-class Research Oversight Committee and
our Scientific Advisory Board.
I have a vision of the future I’m sure you share. It’s a future in
which a family receiving the bad news that a loved one is losing
or at risk of losing their vision due to a retinal degenerative
disease is also told about their treatment options! Together we
can make this vision a reality.
It is my privilege to serve as the chairman of the Foundation
Fighting Blindness, but I cannot emphasize enough the critical
role you, our generous donors and supporters, play in making
the progress FFB has enabled possible.
Thank you for your continued support.
David Brint, Chairman