Batten Disease is a RARE, fatal, inherited disorder that affects
the Fries Sisters.
On January 3rd, 2018, Cecilia and Lilly were diagnosed with CLN3 Batten Disease. Batten disease is a neurodegenerative disorder. There is no treatment, there is no cure, it is fatal. It is usually first diagnosed with vision loss. Eventually, they will develop seizures around age 9. Dementia symptoms including mood and behavior changes will present. Their muscles will weaken to the point where they will no longer be able to walk or talk and will be bedridden. Eventually, they will need a feeding tube as they will no longer be able to feed themselves. And then, eventually, they will die. The lifespan for this horrible disease is late teens to early twenties. Join us here to follow our journey.
The Rare Sisters Batten Foundation aims to help further the development of medical research for treatments and cures for CLN3 Batten Disease, and provide monetary assistance to families with children diagnosed with Batten Disease.
Financial assistance for families can be given for any needs the family encounters due to Batten Disease; no request is too big or too small.
Meet the Rare Sisters
Meet the inspirational girls Cecilia & Lilly, and learn more about Batten disease.
DONATE
Donating to the Rare Sisters Batten Foundation will help further the development of medical research for treatments and cures for CLN3 Batten Disease, and provide monetary assistance to families with children diagnosed with Batten Disease.
EVENTS
The Rare Sisters Batten Foundation hosts two Expect Miracles events each year: a 5k in the spring, and a gala in the fall.
SHOP
Shirts, mugs, headbands, and more. All Proceeds support the Rare Sisters Batten Foundation.
