Tom Update:

7/18/25 Tom's 24th Birthday!

Through your generosity, Tom's infusions are paid for through August.

We continue to concentrate on "quality of life" and, to that end , his uncle (my favorite brother) has given him a wheelchair van!

We are on the road!!!

Additionally, The Lafora trial has started in Texas. Even though Tom 's disease is too advanced for him to qualify, we are supporting the 10 children accepted. We share their journey ... They are "family"!

If you would like to donate in honor of Tom's 24Th Bday on this site,

I will forward to Chelsea's Hope, hopefully with matched funds.

Another option is to donate through the link below:

https://givebutter.com/LaforaSafetyStudy/chelseas-hope-board-of-directors/sheilabarter

Please keep praying for all the Lafora children and their families.

Thank you so much!

11/6/2024 Yesterday's update was intended to let all Tom's supporters know that your previous donations are finally being used to fund Tom's drug infusions through Feb 2025.

I did not mean to solicit more funds for the drug! But, if received,

further donations would be used for travel, parking, copays etc.

Thank you so much for your support!!

11/5/2024 Update ...Tom's first infusion!

Thank you all for your support & prayers!

Looking forward to Spring 2022!! Please share our hope.                             

A little over 3 years ago, my oldest grandson, Thomas, was diagnosed with Lafora Disease.

 

Lafora Disease is a rare, severe, genetic, progressive epilepsy, characterized by intractable seizures, difficulty walking, muscle spasms, neurological deterioration, rapid cognitive decline, childhood dementia, and often times, death.

 

Symptoms begin in the teenage years in otherwise healthy individuals. These children suffer from seizures and cognitive decline and usually die within 10 years of onset of symptoms.

For example, Thomas hiked Mount Washington less than a year before being diagnosed. He was also an avid, long distance runner. Now, he cannot walk without assistance and requires 24 hour care.

There is currently no cure nor any beneficial therapies.

 

For the past 2 years, while awaiting a gene therapy trial to begin, Thomas traveled to the University of Texas Southwestern Medical Center to document the disease progression. Initially, the trial was to begin this year, however COVID and additional FDA requirements have pushed it out to the end of next year. Obviously, this was devastating news since the disease is progressive and in another year the gene therapy may not be beneficial to Thomas.

 

After finding out about the delay, my daughter searched the internet looking for other therapies. She found (right here in MA) Enable Therapeutics, a start-up biotechnology company that has a potential therapy for Lafora Disease. She reached out, met with one of the founders and coordinated a meeting with Thomas’ Team at Boston Children’s Hospital. 

Enable Therapeutics is actively pursuing investors, but, currently, is relying on grants and fundraising to move forward with their research and prepare this therapy for human dosing.

 

"Team Tom" is raising funds to offset these costs.

 

If you are considering making charitable contributions this year, please consider donating to our GoFundme "Team Tom" !!

 

Thank you so much for considering my very personal request.

Tom was featured at the 2019 Lafora Disease conference in Spain

   Link: shttps://drive.google.com/file/d/1mpxmLgtNOuBYfY_JnxZ5s-8vaXgEAeo5/view

 

Donations can also be made through the following:

 

Chelsea’s Hope website www.chelseashope.org

or by mail:

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