His future is bright - help keep his vision clear

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.