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 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.
Board of Directors
Beth Fries, President
Brad Stolz, Tresurer
Sara Schaffner, Secretary