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 non-profit organization. EIN: 27-1008382
Chelsea’s Hope c/o Dr. Donohue
976 Maywick Dr.
Lexington, KY 40504
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 continue to update all of you as we receive more information.
To read the statement
RESEARCH PAPER: Lack of p62 Impairs Glycogen Aggregation and Exacerbates Pathology in a Mouse Model of Myoclonic Epilepsy of Lafora
/by Niki MarkouWant to read some research on Lafora disease but a more simplified version? Well Dr Jordi Duran from the Institute for Research in Biomedicine (IRB Barcelona) in Barcelona, Spain has provided us with an easier version of his latest research paper for us to read.
Research Paper: Lack of p62 Impairs Glycogen Aggregation and Exacerbates Pathology in a Mouse Model of Myoclonic Epilepsy of Lafora
This paper discusses the accumulation of glycogen aggregates and understanding the role of the protein p62
To read more
We’re part of the @ChanZuckerbergInitiative’s #RareAsOne Network
/by Niki MarkouA group of 50 patient-led organizations that are strengthening rare disease communities, improving diagnosis, accelerating research and driving progress in the fight against rare diseases.
Learn more here.
Patients are a powerful force in driving research for rare disease — we provide critical insights about our diseases and are fueling significant discoveries.
7,000 rare diseases, one community fighting for cures.
EYE ON HEALTH: Raising Awareness for Lafora Disease
/by Niki MarkouPresident of Chelsea’s Hope, Frank Harris was featured on @wcbtv channel 3 in Tennessee to raise awareness and discuss his story of caring and loosing his daughter Kelsey who had Lafora disease.
To watch the video