Bind Up Batten Fund
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We are on a mission to raise awareness and funds for a treatment and eventually cure for CLN3 batten
11/24/2025
Yesterday Charleston turned 16!
We celebrated with family, friends, swimming, pizza, cookie cake and of course legos!
Today per request more Lego’s and we dyed his hair red. ❤️
In honor of our guy turning 16 please consider a $16 donation to Bind Up Batten Fund with Beyond Batten Disease Foundation to support more research and a cure.
11/05/2025
Today we made an investment in Charleston’s future for healthy teeth, jaw and mouth comfort.
We are so happy this kid is tolerating this type of work that includes patience with getting these braces on and taking care of them (with some help!)
Despite this happy face he’s not too excited about this whole process but understands the point and trusts us ❤️
10/01/2025
I spy Charleston in this video! Pictured working in a mission and wearing a grey T shirt. His chaperone is also standing with him.
Thank you Space Camp and SCIVIS!
Space Camp Hosts Visually Impaired Students | Sept. 30, 2025 | News 19 at 6 p.m. The U.S. Space and Rocket Center is hosting over 100 visually impaired students from 6 different countries this week.
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Jackson, MI
49201
