About

THE CHARLOTTE AND GWENYTH GRAY FOUNDATION TO CURE BATTEN DISEASE WAS FOUNDED TO RAISE THE ESTIMATED 10 MILLION DOLLARS NECESSARY TO FUND THE URGENT MEDICAL RESEARCH TO SAVE THE LIVES OF ALL CHILDREN DEVASTATED BY THIS DISEASE.

OUR STORY

Charlotte Gray was born December 5, 2010, filling the hearts of her parents, Kristen and Gordon, with the same joy all parents feel. She developed at the pace of a typical baby and toddler – walking and talking, with an early passion for gymnastics, dancing and swimming. However, after Charlotte’s first full year of preschool, her parents noticed she had hit a plateau developmentally. After countless questions, and seemingly as many tests, Charlotte was diagnosed in March 2015 with Late Infantile NCL Batten Disease CLN6. The diagnosing geneticist explained that this neurodegenerative brain disease was extremely rare and would leave Charlotte blind, immobile, cognitively impaired, and, ultimately, gone…somewhere between the age of 6 and 12. Their world shattered, Kristen and Gordon immediately had their younger daughter Gwenyth tested and she was given the same grim diagnosis. 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 Gwen, and all future children impacted by Batten disease, from its painful effects.
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Fund the Cure

Our mission is to save the lives of all children impacted by Batten disease, through accelerating the research for a cure. Donate now.

Batten Disease

Frequently asked questions about Batten disease.  

Batten Disease

What is Batten disease? • Batten disease is a rare genetically inherited disorder which belongs to a group of progressive degenerative neurometabolic disorders, known as the neuronal ceroid lipofuscinoses (NCLs). • NCLs are characterized by genetic mutations which disrupt cells’ ability to dispose of wastes, resulting in the abnormal accumulation of certain proteins and lipids (fats) within the nerve cells of the brain and other tissues of the body, resulting in progressive neurological impairment including developmental regression, seizures, blindness, behavior changes and dementia. • There are many forms of NCL. Mutations in at least eight different genes are known to cause Batten disease. • Charlotte and Gwenyth have been diagnosed with Late Infantile Batten disease, caused by mutation(s) in the CLN6 gene. This particular variant is extremely rare and the disease course can differ significantly among cases, making it difficult to predict.
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Advisors

We have created a scientific advisory board to help guide us through the research and development process to cure Batten Disease. Their primary focus will be on Batten CLN6 but we hope to expand to other Batten Disease variants.

GET INVOLVED

Every dollar counts and every moment matters. The money raised will help fund several vital research efforts in the hope of not only stopping the progression of this disease, but also finding a cure.

DONATE

The Cure

Gene Therapy

We are working with the world’s leading researchers studying gene transfer approaches to pediatric orphan diseases. This involves replacing the

Cellular Therapy

We are working on restorative therapies involving stem cell transplantation. These therapeutic cells are customized and then applied to damaged

Small Molecule Therapy

We have identified a very targeted approach to validate novel therapeutics for Batten disease using already approved FDA drugs, GRAS

UPCOMING EVENTS

Due to the generous work of close family and friends of the Grays, unique events will take place to not only raise money to find a cure for Batten disease, but to also raise awareness about the need for more focus on rare diseases. Past Events

Scooter for Batten Scoot-a-thon

May 21, 2016 at 9:00 am to 12:00 pm
Place: Palisades High School Track
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Blog

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Our Partners

CONTACT

The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease is a project of The Giving Back Fund, Inc. (Federal Tax ID 04-3367888), a Massachusetts nonprofit corporation with federal tax exempt status as a public charity under Section 501(c)(3).

Contact

TO CONTACT THE FAMILY
graygirlsfoundation@gmail.com

Media Contact:
FOR MEDIA ONLY!
B|W|R Public Relations
Paulette Kam
310-248-6100

Paulette.Kam@bwr-pr.com

The Charlotte and Gwenyth Gray Foundation

Make checks payable to: "The Charlotte & Gwenyth Gray Foundation"

  • c/o The Giving Back Fund, 5757 W. Century Blvd, Suite 410, Los Angeles CA 90045
  • 310-649-5222
  • curebatten@givingback.org