Odylia Therapeutics

Freya is a happy, caring ,fun, bright 9 year old girl, who loves baking, crafts, reading, horse riding and raising money for different charities and causes as she loves to help others. Watching Freya you probably wouldn’t realise that she is registered visually impaired, having been born with Nystagmus, which causes blurred and incentive vision, and LCA (lebers congenital amourosis) RGRIP1 gene which is a degenerative condition. As Freya’s parents (Gav & Paula Birch) we hope and pray that treatment can become available to prevent this and retain her vision The support we have had over the years is amazing, and our hopes are for it to continue and grow bigger and stronger. Odylia Therapeutics is a charity developing a gene therapy to treat vision loss caused by RPGRIP1 mutations, for which there is currently no treatment. Odylia partners with patients, families, and researchers all over the world to accelerate therapeutic development and is currently conducting late-stage preclinical experiments and is preparing for IND submission for use of the gene therapy in clinical trials. Odylia’s focus starts and ends with patients. We are committed to changing the future for families affected by rare disease around the world. YOU can help bring promising treatments to patients. You can donate from this page - donations are made in USD ($) but then will be converted converted on the backend to GBP which you will see on your statement after the transaction. At Odylia, we accelerate therapeutic development for people with rare diseases, changing the way treatments are brought from the lab to the clinic. We strive to bring life altering treatments to people with genetic disease regardless of prevalence or commercial interest. Odylia is shifting the paradigm to focus on proven science and removing traditional roadblocks. We work to lower costs, reduce development time, focus research, and continuously drive successful programs towards clinical trials and regulatory approval. Strategic collaborations with patient groups, research labs, and commercial partners facilitate our work to ensure treatments are safe, effective, and ultimately reach patients who need them.

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