BENEFITING: Giving Back Fund
Please support us on our 3rd Annual Gray's Peak Hike! This year our big climb will be on August 19th.
The Charlotte and Gwenyth Gray Foundation was created to fund the urgent medical research necessary to save the lives of Charlotte and Gwenyth Gray and many of other children devastated by this disease. Batten Disease is an incredibly rare and fatal neurodegenerative brain disorder; because this disease is so rare, it is considered an orphan disease and has received very little funding. It is up to US (the Gray and Fugere families, their network of friends, and those who are touched by their stories) to raise the amount of money needed to treat and rehabilitate the children who suffer from this previously fatal and cruel disease. The Colorado, California and Minneapolis friends and families of the Grays and Fugeres are hiking/climbing Grays Peak on August 19th in support of Charlotte and Gwenyth Gray Foundation for CureBatten.org. Please sponsor us as we embark on the Gray's Peak 14K climb, or sign up as a Team Member and join us! Kristen Gray (Charlotte and Gwen's mother) and Beth Fugere (Blake and Brett's mother) will be joining us this year and would love your support. Every dollar counts and every moment matters. Additional Information can be found at: CureBatten.org
Charlotte and Gwenyth Gray's Story: 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, Kristen and Gordon, 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.
Blake & Brett Fugere's Story: After several months of misdiagnosis and unanswered questions our sweet Blake (5) was diagnosed with CLN6 in early November 2016. Blake is the 11th person in the world with the CLN6 variant. Immediately we had his then 9 month-old baby brother Brett (now 1) tested and received the devastating news that he too has Batten CLN6. Brett is now the 12th person in the world with this variant. Blake was recently treated with the life-saving gene therapy treatment funded by the foundation. He continues to regain lost skills daily and recently returned to pre-school showing amazing promise. We await next steps to Brett’s treatment to prevent the devastating impacts of the disease from beginning. The Gray Foundation is steadfast in their focus to not only cure Batten CLN6 but other neuro-degenerative conditions and we are right there with them!
The Potential 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 and the other children treated are providing reason to be optimistic, gaining back new words and motor skills almost daily. 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!