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:
“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…]
https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png00Christine Kellyhttps://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.pngChristine Kelly2023-01-12 09:00:542023-08-01 10:49:45Alexis' Story in Local News
“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.
https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png00Christine Kellyhttps://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.pngChristine Kelly2023-01-12 09:00:082023-01-18 12:08:46Read article: 'The importance can't be understated:' Home Care Nurse shortage impacts local residents
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.
https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png00Christine Kellyhttps://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.pngChristine Kelly2022-11-01 09:11:532022-11-10 09:02:07Please fill out a medication survey
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.”
Thank you for all your support! Together, we can #FightLafora.
For Media inquiries, please contact niki@chelseashope.org
Donate Today!
https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png00Markouhttps://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.pngMarkou2022-10-01 04:00:172023-02-14 11:58:00Our second annual #LaforaBodyDiseaseDay is October 1st, 2022