Yesterday, in honor of International Batten Disease Awareness Day, we published a new video showcasing some of the children born with the CLN1 variant. There is still no treatment or cure and we need funding support to keep those efforts going. Please watch and share this video far and wide as a reminder of what we’re fighting for!
If anyone’s ever wondered about Amelia’s #BattenDisease, we did a short Zoom interview ahead of a luncheon for Haley’s Heroes, a foundation focused on supporting families dealing with the CLN1 of Batten Disease.
Edited by Kerry Drum
Another heartbreaking profile of a family doing their best against the cruel CLN1 form of #BattenDisease
We need more research funding NOW!
https://www.nowtolove.co.nz/news/real-life/summer-mudford-rare-batten-disease-46948
Encouraging news: A modified stem cell therapy is showing some promise in delaying CLN1 #BattenDisease symptoms and extending lifespans in mice.
To those dealing with rare disease every day, we see you.
To those researching first-ever treatments and cures, we thank you.
To those with the means and desire to help fund miracles, we need you.
