LHON Collective

ENERGY IN ACTION - EPISODE 100

LHON Collective

Lissa Poincenoit and Malinda Marsh are the co-founders of the LHON Collective, created to make the diagnostic and treatment process easier for patients and connect them with supportive communities. They are also both mothers to children living with Leber Hereditary Optic Neuropathy (LHON).

EPISODE HIGHLIGHTS

What is LHON?

Leber Hereditary Optic Neuropathy (LHON) is caused by a mutation in the mitochondrial DNA. Symptoms include sudden, severe, painless loss of central vision, usually first in one eye, then within a few months in the other.  

How did the quick decline in your son's vision affect his mental health?

This is a large part of why we created the LHON Collective. My son was devastated after he was diagnosed in college and went through all the stages of grief as he learned to cope. He had to rediscover passions, his career path changed and he got involved instead in inspirational speaking, giving talks to raise awareness and share his story. 

Malinda, how has a sudden onset of symptoms affected your kids?

My son finished out the eighth grade advocating for himself with the help and guidance of a teacher for the visually impaired. She consulted his teachers and provided academic support. He took an interest in running, so we found a coach that specialized in visually impaired runners. He joined a run club and this year he has joined the cross-country team as the first visually impaired person in the history of the school, which he's proud of. 

Can you tell us about the LHON Collective and your goals for the organization?

LHON Collective is an evolution of the work that's been going on for over 15 years. We intend to work collectively with everyone who has an interest in advancing the treatment of LHON and work globally. Our LHON Facebook groups connect people around the world, sharing important information and empowering them based on where they are demographically or how they are affected. We also host Zoom meetings and conferences to further connect people and drive and advance research forward. 

LINKS & RESOURCES MENTIONED

LHON Website

https://www.lhon.org/

LHON Communities

https://www.lhon.org/community

RareX Medical Registry

https://rare-x.org/

LHON - Data Collection Program

https://lhon.rare-x.org/

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