Rare Sisters Batten Foundation

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. The Rare Sisters, Cecilia and Lilly Fries were diagnosed in early 2018. The outpouring of support from their community was the inspiration behind the creation of the Rare Sisters Batten Foundation. The Fries family was so humbled and overwhelmed with the generosity of those near and far that were touched by the diagnosis that they wanted to create a foundation to further help fund medical research and profoundly help other Batten families that face the unimaginable changes that this diagnosis brings. Often the changes that come with this diagnosis are financially difficult to overcome, and also necessary to care for their affected children. 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.