What's New Archives - Page 22 of 30 - Chelsea's Hope Lafora Children Research Fund

AmazonSmile Ending

February 2, 2023/by Christine Kelly

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

READ ARTICLE: The democratization of science could speed up healthcare research

January 23, 2023/by Christine Kelly

“A direct connection between scientists and the community helps ensure the science is being as efficient as possible and addressing the direct needs of the patient community.”

This piece features our Science Director, Dr. Kit Donohue (quoted above)! It explores recent challenges in rare disease research, and how decentralized, autonomous organizations (DAOs) like Vibe Bio creates can help in our journey to finding Lafora disease treatments.

Read article

Please fill out a medication survey

November 1, 2022/by Christine Kelly

Lafora disease families, please fill out a medication survey. This will help Dr. Dolce from UT Southwestern determine the common anti-seizure medications used for Lafora disease. You can read before deciding to join.

It is completely voluntary, but the more patients who participate, the better our understanding of the disease. Your involvement is so valuable! It is in English, so please use your own translation option if needed. Please help us spread the word and share the survey with other Lafora disease families.

Our second annual #LaforaBodyDiseaseDay is October 1st, 2022

October 1, 2022/by Niki Markou

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 sister Anissa and brother Ty slowly die, whilst she lives her life as a normal young adult. She discusses the signs she noticed in her sister as the years went on until they received the diagnosis and her life’s mission to study in a Lafora lab on research to find a cure for her siblings. Mother Jenifer Merriam also talks about how it has affected her family.

Lafora Disease is a degenerative neurological condition affecting children. It is terminal; there is no cure. Perfectly healthy children first show symptoms in their early teens and typically die within ten years. Lafora disease is ultra-rare, with around only 80 registered children affected in the world and a suspected 200-300 patients worldwide.

We will be creating awareness and sharing patient and family stories throughout October for you to see the devastating result of the shocking degeneration of young teens who had a whole life ahead of them. No child should face their own death.

Please help us reach a cure! Share our stories in any way you can and via your social media channels (see below) by posting, sharing, reposting, and retweeting this week and for the whole month.

“We rely on individual contributions to raise funds for research, treatment, and ultimately, a cure for those affected by Lafora disease so please donate where you can.”

Anissa with Lafora Disease: Sister Mariah talks about sibling survivors’ guilt

Anissa with Lafora Disease:
Sister Mariah talks about sibling survivors’ guilt