“Helping fund Anissa’s fight for treatment will slow the progression of the disease and give her time as she waits for a cure.”
“Anissa suffers from daily seizures and dementia. She has a g-tube placed to use for all her medications and she experiences ongoing cognitive decline along with swallowing issues.”
“At the age of 23, Anissa receives full-time care at home from her family and nurses. One of the most heartbreaking aspects of Lafora disease is that it robs seemingly healthy teens of their full potential.”
Anissa is passionate about art, and she dreamed of getting to go to college to study it, however, her disease has prevented her from doing that.
Anissa isn’t even able to draw any longer because of the seizures she experiences and because her body makes jerky movements that make it extremely hard for her to hold a pencil.
It’s extremely saddening for Anissa to know that her peers are able to go to college, drive a car, and live independently, yet she is not able to do any of these things that many of us take for granted.
Eventually, Anissa will completely lose her ability to talk or walk as her disease progresses, if a cure isn’t found.
“Anissa has been fighting Lafora for 7 years and desperately needs this treatment,” Crickett said.
“She has participated in a two-year natural history study to collect data on the progression of the disease at UT Southwestern Medical Center in Dallas. The information gathered has established biomarkers to help drive a clinical trial that was to begin in 2021.”
“Unfortunately, the clinical trial was delayed due to Covid and other FDA requirements. The delay of this clinical trial was devastating to the family because Lafora progression never stops.”
Another factor that has greatly impacted clinical trials for Lafora disease is the fact that it’s so extraordinarily rare that there’s a huge lack of funding to study it.