CureBatten

CureBatten The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease

Charlotte Gray was born December 5, 2010, filling the hearts of her parents, Kristen and Gordon, with immense joy and love. She developed like a typical baby, then toddler – acquiring an early passion for gymnastics, soccer, dancing and swimming. During Charlotte’s first year of preschool, her parents began to notice she had hit a developmental plateau. After countless meetings and evaluations wit

h specialists, and seemingly endless tests, Charlotte was diagnosed in March 2015 with Late Infantile NCL Batten Disease CLN6, an extremely rare neurodegenerative brain disease. The Grays were told Charlotte was destined to become blind, immobile, cognitively impaired, and, ultimately, this insidious disease would take her life somewhere between the ages of 6 and 12. Their world shattered, Kristen and Gordon were told to have their younger daughter Gwenyth tested, as this disease is genetically inherited. They received the devastating news that she, too, was a victim and given the same grim prognosis. While Charlotte is showing early symptoms of the disease, she remains strong, with her happiness and smile still constant. However, due to the pace at which Batten disease advances, action must be taken immediately to prevent Charlotte’s progression down Batten’s debilitating path and shield Gwenyth, and all future children impacted by Batten disease, from its painful effects.

05/16/2026
05/11/2026

To all the out there! Happy Mother’s Day-This is for you. Thank you FOX 11 Los Angeles for sharing our story! If you are able to share and donate, please do, we are so close!

Thank you Kristine Lazar and CBS LA for highlighting the work we are doing to get these children treated this year!
04/29/2026

Thank you Kristine Lazar and CBS LA for highlighting the work we are doing to get these children treated this year!

1 like. "Southern California mom works to fight Batten Disease"

04/28/2026

West Coast people, tune into KCAL9 this am at 8:36 to learn more about our upcoming clinical trial!

04/24/2026

Fight for Charli, she needs our help!

One of our sweet CLN6 girls was given an award today! Her bravery, strength and determination are just a few of the tra...
04/24/2026

One of our sweet CLN6 girls was given an award today! Her bravery, strength and determination are just a few of the traits that she possesses! Stevi Ashcraft Univision San Antonio
This little girl will qualify for treatment in June if funds are raised in time. Please consider donating, every dollar counts! There are more children like Charli waiting for this potential life-saving opportunity. No funding=No treatment.

Today is we want to honor all the families living with a rare disease! We are very close to our next clinical trial i...
02/28/2026

Today is we want to honor all the families living with a rare disease! We are very close to our next clinical trial in hopes to find a cure for Batten CLN6. Pictured below is our team development leader Tiffany Vanguard Clinical Inc. with whom we could not do this without! She is pictured with the Genezen team in Indiana making sure our vector is almost ready for treatment!

01/12/2026

Final Day 12 of better late than never, we are always reminded at how hard it is to document your child's journey with a terminal illness. Not only are you coping with your own grief, but then to share your journey with the world is incredibly difficult as it solidify's how real this diagnosis is for the family. We are so grateful to ALL Of our Batten CLN6 families for sharing their journey. We are also grateful to YOU, our donors as we have been able to hit some major milestone payments that were due in order to keep moving this trial forward. Our work is not done, which is why we continue to tell the stories of these beautiful children. Meet 5 year Igorek from Poland. He is our most recently diagnosed little boy and his family is heartbroken as they know the trajectory of this disease. But we are here to tell Weronika Czmoch-Stosio that there is HOPE. We are working towards a treatment that will hopefully be the CURE. Igorek loves puzzles, he love to run and jump like all little boys. Let's keep working hard, sharing his story and others like him so that we can reach our goal of a clinical trial in April/May 2026! We are so close. www.curebatten.org/donate Share, donate and pray.

12/31/2025

Day 11 of please meet Hodei and Ilargi from Spain. They, like the Gray girls are two siblings (boy + girl) who were born healthy and happy. Hodei was diagnosed with Batten CLN6 at the age of five, followed by Ilargi at just three years old. Batten CLN6 is a rare, neurodegenerative disease with no cure, which gradually robs them of their abilities and has a life expectancy of 10 to 12 years.

Hodei is a cheerful, affectionate boy who loves soccer and water. Ilargi is pure light: she loves to paint, sing, and dance. She is also very cheerful and affectionate. They share an immense bond of love that the disease has not been able to break. Alongside them is their little brother, Ekhi, two years old, our greatest source of strength and hope.

We share their story because research is the only way to cure this horrible disease. Please help us, help them. There is a treatment in 2026, that could lead to the cure. Consider donating before the end of the year.
https://www.zeffy.com/en-US/donation-form/donate-in-honor-of-charlottes-birthday

Address

528 Palisades Drive #554
Santa Monica, CA
90401

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Tuesday 9am - 6pm
Wednesday 9am - 6pm
Thursday 9am - 6pm
Friday 9am - 6pm

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