LHON Collective History
LHON Collective was formed as a non-profit organization in 2022 when the Poincenot and Marsh families merged efforts on behalf of LHON.
The Poincenot family was introduced to LHON in 2008 when Jeremy Poincenot became affected by LHON at age 19, and the family became immersed in all aspects of LHON. Funds were raised for LHON research and community support.
The LHON.org website was created and managed as a hub of LHON education and information. The LHON community was developed through individual outreach, social media groups, and virtual gatherings. Clinical trials were rapidly and fully populated, and LHON community members participated in many other research projects. LHON conferences were conducted in collaboration with the UMDF.
The Marsh family learned about LHON in 2021 when one of their sons, Xavier Marsh, lost his central vision to LHON at age 13.
This diagnosis led them to co-found the non-profit LHON Collective with the Poincenot family to accelerate progress towards a cure for LHON while improving the lives of people living with LHON. A new logo was created and the LHON.org website was updated, as LHON Collective formed and developed.
