Fund Anissa’s Lafora Treatment

Fund Anissa’s Lafora Treatment

#teamanissa

#fightSong

 

My name is Crickett Hampton and I am raising funds for my niece, Anissa. She was diagnosed with Lafora disease 5 years ago. She is living with the rarest and most severe form of epilepsy. It is a fatal disease and up until now, there hasn't been any available treatments. She is running out of time and needs community help to get treatment for her rare disease. I am helping to raise funding for her to receive treatment.

 

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 a talented artist and had several pieces of art selected for art shows during high school. In fact, she dreamed of studying art in college and using her talent as she reached adulthood. Anissa doesn’t draw any more telling her mom that she is unable to draw because her myoclonus, jerking motions, make it difficult to use her pencil and she has seizures while drawing due to Lafora. She often struggles just to write her name. Anissa also expresses her sadness about not having the experiences of driving, college life, and her independence like other young adults her age. “This is a disease where we watch them go backward.” Anissa’s doctors have informed her family that in time and without a treatment or a cure, she will lose her ability to walk and talk. Most children with Lafora do not survive past 10 years from the onset of symptoms.

 

 

Anissa has been fighting Lafora for 7 years and desperately needs this treatment. 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.

 

Recently, Anissa and her family were given hope again with a potential treatment that could help slow and possibly stop the progression while she waits for the clinical trial to begin.

 

EnAble Therapeutics is a biotechnology company with the promising treatment that could help not only Anissa but other Lafora patients.

 

                          

The only thing holding this process back right now is funding and since Lafora is ultra-rare, there is no funding to help. EnAble Therapeutics is currently seeking investors and grants however, they need funding to move their treatment forward to patients. Your donation could make this treatment possible for Anissa and others who suffer from this horrific disease.

 

Anissa’s family has been collaborating with her medical team in both Phoenix and Dallas to prepare for treatment. Your donation would help to cover the costs related to treatment, shipping, hospital expenses not covered by insurance from weekly infusions, clinicians, and hospital charges. There could also be travel expenses if Dallas is selected for her treatment site. Funding will also help Lafora research move other treatments forward.

 

Time and slowing the progression are what Anissa urgently needs to make it to the clinical trial.

 

I am asking for funding to help Anissa with her medical treatments and further research efforts to push forward a cure.

 

 

Please read this Washington Post article sharing Anissa’s Lafora story. It was written during covid when trials and research labs were shut down.

Washington post story-

https://www.washingtonpost.com/health/the-coronavirus-pandemic-claims-another-victim-medical-research-for-deadly-rare-diseases/2020/06/03/2a65c10a-947e-11ea-91d7-cf4423d47683_story.html

 

Donations can also be made through the following:
Please note #teamanissa

 

Chelsea’s Hope website www.chelseashope.org

or by mail

Chelsea’s Hope, PO Box 348626, Sacramento CA 95834

Please note #teamanissa

Chelsea's Hope Lafora Children Research Fund is a 503(c)3