Odylia Therapeutics

As many of you know, our sweet Anders has a rare genetic eye condition called Leber Congenital Amaurosis (LCA), which is a severe type of cone rod dystrophy. This condition is not only rare but also progressively degenerative, threatening Anders’ vision and overall quality of life. There are several different genes associated with LCA, but the specific gene mutation that affects Anders currently has no treatment. In our search for hope and a potential cure, we learned about Odylia, an 501(c)3 organization that is making remarkable strides in the field of gene therapy specifically targeting the gene that affects Anders’ eyesight. While we are excited by the progress, the reality is that funding for rare diseases is much harder to come by, and grassroots efforts make a big difference in keeping the research moving forward. We humbly request your financial support to aid Odylia in continuing their critical research and development efforts. We understand that there are many causes worthy of support, so we would be incredibly grateful if you could contribute whatever amount you can. Your generosity will not only support cutting-edge research but also provide hope and encouragement to families like ours who are eagerly waiting for a breakthrough. Thank you for considering our request. With sincere gratitude, Joe and Kim Payne

Dylan is one of the smartest, wittiest, and happiest 4 year olds you would ever meet. She loves gymnastics, music, learning, skiing, swimming, riding her bike without training wheels, running, Peppa Pig, and reading books in both braille and large print. When Dylan was about 2 months old, we noticed that she had nystagmus. Three months later, through many doctors appointments and genetic testing, we learned that Dylan has Lebers Congenital Amaurosis (LCA). As of now, Dylan has enough functional vision that at close distances she can identify shapes, letters, colors, and familiar faces. Since she is still young, it is unknown at what degree of clarity she can see these things. What we do know, is that LCA is a degenerative condition, meaning Dylan’s vision is likely to deteriorate even further as she gets older. As her parents, we are hopeful that before her vision significantly deteriorates, that a gene therapy treatment will become available to preserve, or possible even improve her vision. The data, research and groundwork are all in place for this to happen. We just need funding to help support Odylia in getting this project to clinical trials. This could be reality in two short years if fundraising goals are met. You could help change the future for Dylan and many others just like her!