Entries by Markou

Our second annual #LaforaBodyDiseaseDay is October 1st, 2022

Anissa with Lafora Disease: Sister Mariah talks about sibling survivors’ guilt For our second annual Lafora Body Disease Day this October 1st, 2022, we wanted to share the Merriam family story. Watch sibling Mariah Merriam talk about her challenges of being the only sibling without Lafora disease and the survivor’s guilt she feels watching her […]

Vibe Bio and New Hope Therapeutics launch today

Today, I’m thrilled to share that our community is growing as our partnership with Vibe Bio officially launches to form New Hope Therapeutics – our joint company dedicated to pursuing a treatment for Lafora disease. I first learned about Vibe Bio and its cofounder Alok Tayi through a mutual contact, and after hearing about Vibe […]

ONCE UPON A GENE PODCAST- EPISODE 138 – Chelsea’s Hope Lafora Children Research Fund with Niki Markou and Jenifer Merriam

Jenifer Merriam and Niki Markou are courageous moms, serving on our Board of Directors. They share what it’s like to cope with a child’s suffering with a rare disease with no cure. These moms are working together to fund research for medical therapies and were recently awarded a Chan Zuckerberg Initiative Rare As One grant, […]