Many of you have been instrumental in developing and funding clinical trials that may be saving the lives and quality of life of children with Batten disease. Thank you!
Because of your early support, the Charlotte and Gwenyth Gray Foundation was able to fund research and pay for genetic therapy for 12 children already. For most of these children, the progression of this devastating disease was either prevented, stopped, or slightly reversed. The work of the Charlotte and Gwenyth Gray Foundation continues and offers hope to families that was not possible before these clinical trials. (You may remember that Kristen Kaiser Gray, the children’s mother, grew up in Naperville and is a close high school friend of both of my daughters.)
The attached video provides an update about the Gray children and information about another need the foundation wants to address – the education and therapy of children who have special needs due to brain damage.
My younger daughter, Christi Ioka, has joined other friends of the Gray family and parents of other Batten-diagnosed children to raise funds for the foundation by climbing some of Colorado’s highest peaks (14ers). For three years, she has climbed Grays Peak (14,278 feet) and Torreys Peak (14,274 feet). On September 15, she will climb Mt. Bierstadt (14,065 feet) and Mt. Evans (14,271 feet) with her friends, Kristen Kaiser Gray, and other Batten parents.
If you would like to sponsor Christi in this fundraising effort (or become a team member climbing the 14ers), please click on the Crowdrise link in this email.
Thank you, again, for your support of this life-saving effort to cure Batten disease (curebatten.org). You have been instrumental in saving the lives of these children. May God continue to bless you and these families.
—Jini Clare, Naperville Resident
Editor’s Note / Back in mid-July of 2015, lifelong friends (Casey McCormick, Bianca Morin and Whitney Robbins), caring strangers, and compassionate community leaders rallied together in a race against time to plan a benefit aimed to help save the lives of two little girls, Charlotte and Gwenyth Gray, whose mother, Kristen Kaiser Gray, grew up in Naperville.
The children had been diagnosed with Batten disease, a little known and rare genetic, degenerative brain disorder that would have led to disability and an early death without a cure that did not exist at the time.
On October 3, 2015, Friends for the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease held a benefit and the Naperville community came together to learn about Batten Disease with support. Now three years later, the Foundation reports that all that generous fundraising helped make a difference for trials and treatment to 12 youngsters. Furthermore, a special needs elementary school is about to open this fall to continue hope and education.
The school in West Los Angeles County 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.
Previous PN Posts about local efforts to help fund finding a cure for Batten Disease
