Please support us on our 4th Annual 14er Climb to raise money for children with Batten Disease! This year our big climb will be on Sept. 15th; we will be conquering Mt. Biestadt and Mt. Evans!
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 Mt. Bierstadt and Mt. Evans on September 15th in support of Charlotte and Gwenyth Gray Foundation for CureBatten.org. Please sponsor us as we embark on this 14er climb, or sign up as a Team Member and join us! Kristen Gray (Charlotte and Gwen's mother), Beth Fugere (Blake and Brett's mother) and Chris Velona (father to Sebastian, another Batten child) 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.
This year the funds will go towards a needed resource for children suffering from Batten Disease and other severe neurological diseases and traumatic brain injuries - The Gray Academy.
THE PROBLEM: There is a significant gap in the educational system for children with neurological challenges and developmental delays. The majority of these children have additional requirements that are not being met in the traditional school environment. Based on their unique and specific needs, many children are taken out of school multiple times during the week for hours at a time. Not only are they missing key instructional and social opportunities, but the physical toll of switching environments on the children and their caregivers is a hardship and a distraction from learning.
THE SOLUTION: The Gray Academy will be a non-profit non public* special needs elementary school in West Los Angeles County that will cater to children with moderate to severe neurological challenges, such as speech or gross developmental delays, gross and fine motor challenges and cognitive impairments. The Gray Academy criteria for acceptance will include but not limited to students with rare diseases, genetic disorders, traumatic brain injuries, mobility challenges, immunocompromised and more. The Academy will serve not only as an educational institution, but one with the capabilities of meeting the unique therapy needs of students at one location. We will have the equipment necessary for rehabilitation, safety in the classroom, as well as traditional and non-traditional therapeutic interventions.
Charlotte and Gwenyth Gray's Story: Charlotte 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, sweet Blake (6) was diagnosed with CLN6 in early November 2016. Blake is the 11th person in the world with the CLN6 variant. Immediately after, his then 9 month-old baby brother Brett (2) 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.
The Gray Foundation is steadfast in their focus to not only cure Batten CLN6 but other neuro-degenerative conditions.