CUREBATTEN HAS 2 LEADS FOR COMPLIMENTARY TREATMENTS & NEED YOUR HELP!
Please support us on our 5th Annual 14er Climb to raise money for children with Batten Disease! This year our big climb will be on August 24th; we will be conquering La Plata Peak.
This year the funds will be going toward the completion of the small molecule studies already underway. CureBatten has been aggressively funding a year long study to find complimentary treatments to enhance the gene therapy. The scientists in New Zealand have found 2 solid leads on drugs that are showing promising results; we need your help to cross the finish line. The study is 4 months away from completion. The results will help children like Char and Blake regain skills faster, walk better, and have a better quality of life. THE PROBLEM? The study costs $6k/month. Join us in raising the $24k needed to near this amazing opportunity to it's completion and help give JOY back to the children who INSPIRE us everyday! Every dollar counts!
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 La Plata Peak on August 24th 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) 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: 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. Blake and Brett received the life saving gene treatment. Blake been working hard at regaining lost skills and Brett has been protected against any disease symptoms.
If you're interested in joining Blake's Virtual Climb with us, please visit the link below!
The Gray Foundation is steadfast in their focus to not only cure Batten CLN6 but other neuro-degenerative conditions.