Odylia Therapeutics

This is Rem Nabuurs Kim, born on the last day of 2023. He is a very lively boy who radiates a zest for life and shares it with everyone around him. Unfortunately, he has a visual impairment. His sight is poor due to a rare genetic disorder, and without available treatment his vision will likely continue to deteriorate. There is currently no cure for this condition — Leber Congenital Amaurosis (LCA) caused by a mutation in the RGRIP1 gene — yet Odylia Therapeutics, a non‑profit organization in the United States, is working hard on a solution. The progress of their research is promising, but it still depends on sufficient funding. Only with an adequate budget can the full development process be completed and the gene therapy become available — not just for Rem, but for everyone affected by this mutation. That’s why we kindly ask you to contribute to this research. Let’s hope this will help Rem preserve, or even improve, his vision! Thank you in advance for your support, on behalf of Rem and his family. If you would like to learn more about LCA/RGRIP1 and the status and progress of the research, please continue reading on this page .

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