Olivia Burtwistle is a 12-year-old girl in search of a cure for Batten disease. — -- Olivia Burtwistle grew as a typically curious and energetic child until soon after her fourth birthday, when ...

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 ...

(WHAS11) - Miranda Goranflo said, 'She was the most loving and affectionate little girl. She would always hug and kiss.' Hailey Goranflo, a little Bullitt County girl with so many hopes and dreams.

Doctors told Gordon Gray his daughters would not live to see their 12th birthday — -- The Hollywood couple who started a foundation to quickly fund research to find a cure for Batten Disease, ...

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 ...

EDEN PRAIRIE, MN / ACCESS Newswire / April 9, 2025 / Today, the Born and Schneider family announced the launch of Helen's Pink Sky Foundation, a new nonprofit dedicated to accelerating research, ...

VICTORIA, Minnesota (WCCO) -- A Victoria, Minnesota, family is channeling their heartbreak into hope. When Dan and Stephanie Born welcomed their daughter Helen into the world, they felt their family ...

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 ...

SAN ANTONIO — Charli is fighting an extremely rare and terminal condition often referred to as childhood dementia at just 4-years-old. Charli qualifies for a gene therapy trial in California later ...

“CLN6 Batten disease is a devastating disorder with no approved therapies, and families deserve hope,” said Dr. Raymond Wang, Director of the Campbell Foundation of Caring Lysosomal Program at CHOC.

Sad news to share today. Charlotte Gray died last Friday at age 13 and one half. The daughter of producer Gordon Gray and Kristen succumbed in her battle against the rare degenerative brain disorder ...

(NEW YORK) — The Hollywood couple who started a foundation to quickly fund research to find a cure for Batten Disease, which their two daughters are living with, says they are counting on a miracle ...