A fundraiser for a rare neurodegenerative disorder affecting a four-year-old girl with a connection to racing was highlighted during the 2025 Indianapolis 500. Helen’s Pink Sky Foundation was featured ...
For the three out of every 100,000 children who are born with Batten disease, the diagnosis is one of the most devastating that a family can receive. Emily Blackburn, 32, found out in March 2023 that ...
A MUM who thought her little girl “would be reading by one” is now watching her slowly fade away after she was diagnosed with a devastating childhood disease. Stacey Sprason, 41, was shocked to ...
On Wednesday's episode of The Act, Hulu's newest (incredibly addicting) TV show, Gypsy Rose Blanchard 's health issues weren't on full display-instead, it focused on one specific event: a cosplay ...
SIOUX FALLS, S.D. (KELO) — We recently brought you a story on a 2-year-old Brookings girl battling a rare and fatal genetic disease. Sloan Murfield was diagnosed with Batten Disease on January 20.
BEST FOR THEIR CHILD. A DAY OF CARING AND A DAY OF HOPE FOR FAMILIES BATTLING A TERMINAL NEUROLOGICAL DISEASE FOR THEIR CHILDREN, GOVERNOR JIM PILLEN DECLARED JUNE 9TH AS BATTEN DISEASE AWARENESS DAY ...
The Batten Disease pipeline presents opportunities with over 10 companies developing 12+ drugs in varied clinical stages. Novel approaches, including gene therapy and enzyme replacement, address unmet ...
Theranexus SA (FR:ALTHX) has released an update. Theranexus, in collaboration with the Beyond Batten Disease Foundation, reports positive 18-month results from its phase 1/2 study of Batten-1, ...
INDIANAPOLIS (WISH) — Helen’s Pink Sky Foundation is hosting a lemonade stand event to raise awareness and funds for Batten disease research. The event, inspired by Helen’s upcoming fourth birthday, ...
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Batten Disease: Types, Symptoms, Diagnosis and Treatment
Learn all about batten disease, its symptoms and treatment options. Understand how this rare neurological disorder affects children and progresses over time ...
LINCOLN, Neb. (KOLN) — Despite the unrelenting rain Saturday morning, dozens of friends, family and supporters gathered at Eagle Elementary for a 5K run/walk to support a member of their own community ...
Grayson Naff is 7½ years old. He’s in first grade. He lives in Tipp City. He loves his 22-month-old brother Beckett, video games, YouTube and his friends at Nevin Coppock Elementary School — not ...
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