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. Follow our journey at raresisters.org
Beyond Batten Disease Foundation was founded in 2008 to eradicate juvenile Batten disease by raising awareness and funds for medical research. Beyond Batten’s strategy brings together other affected families to connect communities and resources to achieve the goal. Rare Sisters is partnering with BBDF to find a cure for juvenile Batten disease for the Fries Sisters and hundreds of other children.
The Be Project is a $6 million campaign to fund the first-ever treatment for juvenile Batten disease. Your contributions are making a difference!
Rare Sisters has a raised a total of:
What Supporters are Saying:
|Daniel and Tanya Gormley||Supporting Rare Sisters Fund|
|Jennifer Stamper||Supporting Rare Sisters Fund|
|Donations Prior to Dec 31, 2018||Supporting Rare Sisters Fund|
|Facebook Donations||Donations from November, 2018|
|Rare Sisters Day||A community event in support of Rare Sisters Fund|
|Daniel J Gormley||Supporting Rare Sisters Fund|
|Jeanine Koontz||Supporting Rare Sisters Fund|
|Landon Smith||In honor of Pete Ambrose & his nieces|