Jacksonville Area Chapter Welcome Letter

Dear Friends of the FFB Jacksonville Area Chapter:

Welcome to the Jacksonville Area Chapter of FFB! Our goal as chapter leaders is help fundraise for research, educate the region about retinal degenerative diseases, and provide a sense of community and hope for those who are dealing with the loss of vision.

As Chapter President, I want to share my family’s story and why being a part of the Jacksonville Area Chapter is so important. Please click on the LEADERSHIP tab for “My Story”, which you will find a link to below my name….but don’t go there quite yet…..I have more to share with you.

FFB has offered us a chance to help make a difference and fight these vision-robbing diseases in our local community. We now have chapter members, many who are personally affected or have family and friends affected by retinal diseases, such as, retinitis pigmentosa, Leber congenital amaurosis, Stargardt disease, choroideremia, cone rod dystrophy, and age-related macular degeneration (AMD – both wet and dry forms) and others. WE ARE HERE FOR YOU. YOU ARE NOT ALONE. Our chapter is one of many across the country that works very hard to help people keep current on the latest research concerning retinal diseases. We also learn about support services and other opportunities that are available in Duval and surrounding counties. Over the past four years, chapter members have heard from retinal specialists, low vision specialists, mobility instructors, and more. We’ve learned about local resources such as the Talking Books Library, WJCT Radio Reading Service, and Independent Living for Adult Blind (ILAB), which has provided helpful information about cooking, communication, mobile adaptive technology, guide dogs, safe travel techniques using a cane, sighted guides and so much more. We have learned about many free courses available through the Hadley School for the Blind – even some of which are great for family members who wish to learn how best to deal with an individual who has lost or is losing their sight. We have had a GAME DAY, with sighted and unsighted all together playing games such as BINGO, Dominos, Checkers, Tic Tac Toe, Scrabble, cards, etc. We have had handheld magnifiers and common household items to “test” them on. The list goes on.

Our Chapter is blessed to have Dr. Sandeep Grover from the University of Florida/Shands as our Education Advisor. Dr. Grover’s insight and commitment to our Chapter is invaluable. His personal demeanor and ability to relay quite technical information into easy to understand analogies has made a positive difference in all our lives. This helps our Chapter members feel more in control of their situation. The mysteries of the unknown can be understood. Members feel more empowered to embrace resources and make the best of their situation. The updates of Science breakthroughs, ongoing studies, and clinical trials are what continue to give us all hope.

We are fortunate to have an active and engaged chapter board that carries the spirit of FFB’s Co-Founder and Chairman of the Board, Gordon Gund. His vision is our vision: We will, through helping to fund vital research,