New article about Lafora disease
New from Dr. Jordi Duran! It’s a review on how the accumulation of glycogen in astrocytes, glial cells in the central nervous system, contribute to Lafora disease and other neurodegenerative conditions.
Chelsea’s Hope Received CZI Grant to Advance Lafora Research
We are so excited and grateful to share that, in partnership with the University of Texas-Southwestern, we’ve received a Chan Zuckerberg Initiative grant to advance Lafora disease research. The project is titled Closing the Knowledge Gaps in Lafora, a Fatal Neurodegenerative Disease.
The research team includes primary investigators Dr. Berge Minassian and Dr. Kit Donohue, as well as Dr. Maria Chahrour, Dr. Sharmistha Mitra, Dr. Felix Nitschke, and Dr. Matt Gentry.
Project goals include:
Connecting researchers to the patient community
Engaging patients in research
Opening the path to therapyAmazonSmile Ending
AmazonSmile is ending February 20, 2023.
AmazonSmile is ending on February 20, 2023.
Amazon has donated $3,832.56 to Chelsea’s Hope since we joined the AmazonSmile program in 2021.
It might not be much to many, but it’s a lot to us!!! We are grateful for every cent and disappointed that the program is ending. Here’s part of their official statement:
“To help charities that have been a part of the AmazonSmile program with this transition, we will be providing them with a one-time donation equivalent to three months of what they earned in 2022 through the program,* and they will also be able to accrue additional donations until the program officially closes in February.”
*Chelsea’s Hope anticipates at least a $200 one-time donation
Alexis’ Story in Local News
AC Cruz has been sharing her daughter Alexis Rodriguez’s story with local news outlets to raise awareness and funds while she faces Lafora disease. Read the news articles here:
Long Island teen battles rare disease that affects less than 100 people globally
News 12, Long Island
December 19, 2022
“A Freeport High School alumnus is suffering from a rare and terminal disease that only affects 80 people worldwide.” [Read more…]
Freeport Mom Opens Up About Daughter’s Rare, Terminal Illness
Jeremy Barmash, Patch
Freeport, NY
January 5, 2023
“A once vibrant girl from Freeport is battling a rare and fatal form of epilepsy.” [Read more…]
January 12, 2023
“Alexis Rodriguez, a 19-year-old from Freeport, is facing a difficult and uncertain future as she battles a rare and fatal form of epilepsy.” [Read more…]
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
