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, Post Office Box 348626, Sacramento, CA 95834
Alexis’ Story in Local News
/by Christine KellyAC 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:
“A Freeport High School alumnus is suffering from a rare and terminal disease that only affects 80 people worldwide.” [Read more…]
“A once vibrant girl from Freeport is battling a rare and fatal form of epilepsy.” [Read more…]
“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…]
Read article: ‘The importance can’t be understated:’ Home Care Nurse shortage impacts local residents
/by Christine KellyNurse 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.
Please fill out a medication survey
/by Christine KellyIt 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
/by Niki MarkouAnissa 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.
Read more on our Press Release here
You can tag us on:
Facebook: @chelseashopelaforacure
Instagram: @chelseashopelaforacure
Twitter: @Chelseashopela1
LinkedIn: Chelsea’s Hope Lafora Children Research Fund USA
Tiktok: @chelseashopelaforacure
Hashtags:
#LaforaBodyDiseaseDay
#FightLafora
#ChelseasHopeLaforaCure
#LaforaDisease
#RareDiseaseAwareness
For Media inquiries, please contact niki@chelseashope.org
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