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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.  They are blind, suffer from dementia, experience seizures, are cognitively declining, and are behaviorally challenging. Within a few years, both will suffer from untreatable seizures, mobility loss, increased dementia symptoms, and much more. Sadly, there are not yet any treatments or cures for Juvenile Batten disease, and life expectancy is late teens to early twenties – our only available option is palliative care.  Join us here to follow our journey.

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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. ​​

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Meet the Rare Sisters

Meet the inspirational girls Cecilia & Lilly, and learn more about Batten disease.

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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.

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BLOG

Keep up with the Rare Sisters and the Foundation by subscribing to the  blog.

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YARD SIGN

Show your support for the Rare Sisters with a yard sign.  Minimum $10 donation and local pick up please.