About

THE CHARLOTTE AND GWENYTH GRAY FOUNDATION TO CURE BATTEN DISEASE WAS FOUNDED IN 2015 TO SAVE THE LIVES OF ALL CHILDREN IMPACTED BY BATTEN DISEASE BY ACCELERATING THE RESEARCH FOR A CURE AND PROVIDING FINANCIAL SUPPORT FOR PATIENT THERAPIES AND EQUIPMENT CRITICAL TO THEIR WELLBEING AND REHABILITATION. THE FOUNDATION CONVENES THE WORLD’S LEADING RESEARCHERS IN BATTEN AND OTHER NEURODEGENERATIVE DISORDERS TO PROMOTE COLLABORATION AND IDEA SHARING TO LEAD TO A CURE.

OUR STORY

Charlotte Gray was born just a few weeks before Christmas 2010 and developed at the pace of a typical baby and toddler – walking and talking, with an early passion for gymnastics, dancing and swimming. After Charlotte’s first full year of preschool, her parents noticed that she seemed to hit a plateau developmentally. In March 2015, after months of unanswered questions and tests, Charlotte was diagnosed with Batten disease (Late Infantile NCL Batten Disease CLN6). A geneticist explained that this rare neurodegenerative disorder had no treatment options or cure and would leave Charlotte blind, immobile and cognitively impaired, and ultimately, gone between the ages of 6 and 12. The Grays immediately had their younger daughter Gwenyth evaluated and tests revealed the same devastating diagnosis. Due to its rarity, solutions for this fatal disease had received minimal research, focus and funding. Kristen and Gordon’s worlds were shattered, but they were unwilling to accept “there is no cure” for an answer and created the foundation to ensure that they would be the last parents to hear that there are no options when children in the future are diagnosed with Batten disease CLN6.
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Fund the Cure

The gene therapy program initiated, coordinated, and funded by the foundation has resulted in an FDA-approved first of its kind investigational gene therapy clinical trial for children with Batten CLN6. Three patients have already been enrolled for participation and recruitment for additional patients is ongoing. While the road ahead post-therapy will be long, Charlotte is providing reason to be optimistic, gaining back new words almost daily. She recently surprised her parents by singing a line from her favorite movie Frozen! Led by our team of medical advisors, we continue to actively fund leading research teams exploring promising innovations in gene therapy, small molecule therapies, stem cell therapy, RNA modulating compounds, repurposed pharmaceuticals, and natural compounds. Over $3.2 million has been committed directly to medical research in less than a year. It is our expectation that the advances achieved related to the treatment of this particular variant of Batten disease will be applicable to medical advances necessary to combat additional rare diseases impacting hundreds of millions of people. Help us Fund the Cure! Donate now.

The Research

Gene Therapy

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

Cellular Therapy

We are optimistic about the potential for research into restorative therapies involving stem cell transplantation. These therapeutic cells are customized

Small Molecule Therapy

Our research team has identified a targeted approach to validate novel therapeutics for Batten disease using already FDA approved drugs,

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

OUR SCIENTIFIC ADVISORY BOARD GUIDES US THROUGH THE RESEARCH AND DEVELOPMENT PROCESS TO CURE BATTEN DISEASE. OUR INITIAL PRIMARY FOCUS IS ON BATTEN CLN6 BUT OUR GOAL IS TO EXPAND TO OTHER BATTEN DISEASE VARIANTS.

GET INVOLVED

Every dollar counts and every moment matters. Your generosity will help to fund several vital research and treatment efforts in the hope of not only stopping the progression of Batten disease, but also finding a cure.


Donate to be part of the cure.

Be a Fundraiser.
Incredible friends like The Smith Family and Bill and London Hobin have effectively used crowdfunding to raise hundreds of thousands of dollars. Share our story with your friends and become a fundraiser to CureBatten!

Join our mailing list and receive updates.

Donate

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

Dinner at M in Columbus, Ohio

September 25, 2016 at 5:30 pm to 10:00 pm
Place: M @ Miranova
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14K GRAY’S PEAK CLIMB

July 30, 2016 at 7:00 am to 5:00 pm
Place: Gray's Peak, Colorado
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Barry’s For Batten

August 20, 2016 at 3:30 pm to 4:30 pm
Place: Los Angeles
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Media

NEWS AND UPDATES.
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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