The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.
Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 nonprofit organization. EIN: 27-1008382
Chelsea’s Hope c/o Dr. Donohue
976 Maywick Dr.
Lexington, KY 40504
Use ICD-10 code G40.C for Lafora.
Vibe Bio Launches To Transform Drug Development For Patients With Rare Diseases
/by Niki MarkouMore information on new biotech company Vibe Bio and founder Alok Tayi helping Chelsea’s Hope and patients with rare disease by using crypto to support the development of treatments.
Vibe Bio and New Hope Therapeutics launch today
/by Niki MarkouToday, 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
/by Niki MarkouJenifer 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, […]
Announcement: Ionis Pharmaceuticals
/by Niki MarkouDear Lafora Disease Community, We have received a letter from Ionis Pharmaceuticals regarding the proposed clinical trials 2022. This year has presented us with new challenges yet again. Continuing to Hope… We will never stop fighting for a cure. Our team is working tirelessly to uncover new ways to overcome our challenges. We will […]