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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.  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.

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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.

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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SHOP

Shirts, mugs, headbands, and more.  All Proceeds support the Rare Sisters Batten Foundation.

GET IN TOUCH

We'd love to hear from you

303-842-2680

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© 2020 by Rare Sisters Batten Foundation

a 501c3 Non Profit Organization Tax ID 84-44-06415

PO BOX 746561

Arvada CO 80006

foundation@raresisters.org

303-842-2680

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