Freya is happy 7 year old, she enjoys horse riding, baking, and building her Lego sets just like all other little girls do. What you wouldn’t realise about Freya unless you really took notice is that she is registered severely sight impaired. We realised there was a problem with Freya’s vision when she was 6 weeks old and she was diagnosed with Lebers Congenital Amaurosis when she was 6 months old, The last 6 and a half years have been a steep learning curve for us all, full of challenges and adaptations to help Freya along the way. There have been both amazing highs and devastating lows for us all. Unlike many children with her condition, she has some useful vision left for now and we are thankful that with a little help she has been able to see the things we often take for granted. However, Lebers is a degenerative condition so very sadly in the near future her vision is likely to decline even further. As her parents we cling on to the hope that before this decline happens a treatment will become available to allow her to retain the vision she has. The treatment will not restore her vision, but rather keep it at the level it is. There is limited funding in this area, but we are now aware of a research project into Freya’s gene that may one day be the answer to our prayers. As always we are extremely grateful for everyone that has helped us raise money along the way, and for every penny people have donated. We continue to do our best to help fund the research project, in the hope that one day we will find a cure for Freya and others alike, Gav & Paula Birch Freya’s very proud parents

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.