Chelsea’s Hope Received CZI Grant to Advance Lafora Research

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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 therapy
Read more

AmazonSmile Ending

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AmazonSmile online shopping 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.”
So, you have until February 20 to shop and support Chelsea’s Hope.

*Chelsea’s Hope anticipates at least a $200 one-time donation
Shop AmazonSmile Read AmazonSmile’s Announcement

Alexis’ Story in Local News

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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…]

Freeport girl fighting rare, fatal epilepsy

Mohamed Farghaly,
Long Island Herald, NY
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…]

Patch Article News 12 Video Alexis’ Story Long Island Herald Piece

Read article: ‘The importance can’t be understated:’ Home Care Nurse shortage impacts local residents

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“If nurses weren’t here, then she – I can say with pretty much absolute certainty – would not be here either,” Michele said.

Nurse care for a Lafora disease patient is so important, though not always accessible.

If your child needs 24/7 care, then having two people at home is a necessity. Michelle Ambroe was featured by her local news discussing the care her daughter, Jessica, needs because of Lafora disease.


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