13-year old “This Is Us” actress Mackenzie Hancsicsak has announced a fundraising event later this month to raise funds and awareness for a rare neurological disorder known as Batten Disease, which has affected Hancsicsak’s five-year-old cousin Ellery.
The fundraiser shared by Hancsicsak is meant to raise funds for treatment for her five-year-old cousin Ellery, who has been diagnosed with Batten’s Disease.
Batten Disease is a rare and often fatal neurological disorder that predominantly impacts children, including Hancsicsak’s cousin who was diagnosed with the CLN6 variation of the disorder.
“My cousin Ellery has a rare degenerative fatal disease called Batten disease,” wrote Hancsicsak in an online post. “I wanted to try to do something to raise awareness for Batten disease and to also be able to raise funds for the family to help pay for all of her physical, occupational and speech therapies.”
Batten Disease is the name of a broad class of rare, fatal inherited disorders of the nervous system, affecting two to four newborns out of every 100,000 births in the United States.
“All Ellery does every day is go to therapy,” Mackenzie Hancsicsak’s mother Melinda told KHTS. “The goal is to get into gene therapy, although it is a rare variant of the illness. They’re still going to try and use it.”
Symptoms first begin when a child is between the ages of 5 and 10, and include behavioral changes, seizures, blindness, intellectual decline and loss of speech. The disease ultimately leads to premature death.
“Children and adults with this rare neurodegenerative disorder have inherited genetic material from their parents that after some years, begin to impact their daily lives,” the Batten Disease Support and Research Association (BDSRA) writes.
“Symptoms (of CLN6) vary among children, but typically start after the first few years of life and include developmental delay, changes in behavior, and seizures,” the BDSRA writes.
There is a virtual event called “An Evening 4 Ellery” slated to start at 4 p.m. Saturday, May 1, which is designed to raise funds for Hancsicsak’s cousin Ellery.
The virtual event is planned to be a professionally moderated trivia competition, with prizes awarded to competition winners, as well as a silent auction.
“A lot of people are reaching out, although many people aren’t aware of the illness because it is not that well known,” Melinda said, adding that many people have sent letters of support for Ellery. “Donations are also appreciated, whatever people can do is appreciated.”
Donations are also an available option for supporters of the cause, in addition to ticket purchases for the virtual competition event.
“Their goal is to try and get Ellery into a gene therapy trial, so I set up a Virtual Trivia Night Fundraiser and would love for you to join me to help raise money for Ellery,” Hancsicsak wrote.
To purchase tickets to the fundraising event or to donate to the cause, click here.
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