Jun 21, 2023

Dan Day - Making a Difference Now and for Future Generations

Personal Stories

“Because I have seen such tremendous progress over the years, and I want that progress to continue until the day when we have cures for all retinal diseases, it is important to me that the Foundation be part of my lasting legacy.”

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Meet Dan Day, one of the Foundation’s many supporters directly affected by retinal disease. In the article below, Dan will tell you, in his own words, why he has committed himself to the Foundation’s mission and why, as a member of our Legacy Society, he feels it is important to include the Foundation as part of his lasting legacy.

I am one of over 10 people, spanning five generations, in my family affected by retinitis pigmentosa (RP). That includes my mother, two brothers, two nieces, and a few of their children. I was diagnosed in 1978 at a Foundation Fighting Blindness-funded lab in Boston. Today I am legally blind, but I consider myself fortunate that the disease did not begin to seriously diminish my vision until my late 20s, allowing me to participate in high school and college sports and to drive a car until I was 33 years old. Many of my family members were not so lucky and lost most of their vision as young adults. Losing my vision and watching so many of my family members lose theirs was a strong motivation for me to become involved with the Foundation. In 1990, I joined the local Orlando chapter and its fundraising efforts to support retinal disease research. Over time, I was honored to become the Foundation’s Orlando chapter president and a member of the Board of Trustees. In 2015, I was proud to accept the Gund Challenge with the goal of driving research even faster. Throughout my years of involvement with the Foundation, I have watched the amazing progress in understanding the causes of retinal disease and developing proven approaches for treating and curing these devastating diseases. At the Foundation’s inception in 1971, very little was known about inherited retinal disease. Since then, mutations in more than 270 genes have been identified as underlying causes for these diseases.

Foundation Legacy Supporter Dan Day

As a result of the Foundation’s efforts, a retinal prosthetic device is now generally available, and the first gene therapy for retinal disease is FDA-approved and available to cure one form of RP. In addition, over 35 clinical trials are in progress around the world for retinal diseases, encompassing approaches based on gene therapy, stem cells, and sight-restoring drugs. Though the Foundation does not directly fund every trial, those trials would not be possible without the knowledge born of early Foundation-driven research. Perhaps the most powerful evidence of the Foundation’s effectiveness in finding cures for retinal disease is that large numbers of commercial companies in the medical field are now investing significant capital into clinical trials. These companies are convinced that the approaches proposed by the Foundation have a high probability of success and will lead to cures and treatments. In short, experts around the world recognize the Foundation as the “best of the best” in the field of retinal disease.

All of this incredible progress is only possible because of those who have made a commitment to support the Foundation, including those who designate the Foundation in their legacy planning. Because I have seen such tremendous progress over the years, and I want that progress to continue until the day when we have cures for all retinal diseases, it is important to me that the Foundation be part of my lasting legacy. I simply included the Foundation in my “Designation of Beneficiary” forms for my financial accounts, and it only took a matter of minutes. Now that, part of the legacy I leave for my nieces, their children, and my extended family in the Fighting Blindness community will be to help ensure that, in the future, no one will hear the words, “You are going blind, and there is nothing we can do to help.” I hope you will consider joining me as a member of Legacy Society by including the Foundation in your will, trust, or as a beneficiary of one or more of your beneficiary-designated types of accounts or assets.