4.4 • 7K Ratings
🗓️ 15 February 2025
⏱️ 38 minutes
🧾️ Download transcript
Kristen Gray is the mother of Charlotte and Gwenyth Gray, who were diagnosed with Batten disease in 2015. Kristen and her husband, film producer Gordon Gray, founded the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease.
Doctors explained that there was no cure, nor any treatment options for this rare neurodegenerative disorder which would leave the girls blind, immobile, cognitively impaired, and ultimately gone between the ages of 6 and 12. Kristen and Gordon were unwilling to accept this prognosis. One year later, thanks to unwavering dedication and an overwhelming outpouring of support from all over the world, they built a foundation which coordinated and funded a first of its kind investigational gene therapy clinical trial, providing the first signs of hope for a cure to families impacted by this disease.
Results are ongoing, but promising. The Foundation funded the pre-clinical research and treatment of 15 children to date.
Reality Life with Kate Casey
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0:44.4 | Welcome back for another episode of Reality Life with KKC, and welcome back for this Saturday |
0:48.7 | series episode. Today's guest is an outstanding mom and advocate named Kristen Gray. |
0:55.5 | After the fires and the palisades, several families moved into our community. |
0:59.6 | One evening, I had the pleasure of sitting beside Kristen at dinner. |
1:03.4 | I was captivated by her story, and I knew she would be a great guest because her story would uplift so many others. |
1:10.3 | In 2015, Kristen and her husband Gordon's daughter |
1:13.3 | Charlotte, then age four, and daughter Gwyneth, then age two, were diagnosed with batten disease. |
1:20.6 | Doctors explained that there was no cure nor any treatment options for this rare neurodegenerative |
1:25.5 | disorder, which would leave the girls blind, immobile, |
1:29.0 | cognitively impaired, and ultimately gone between the ages of 6 and 12. As mentioned, |
1:34.9 | batten disease is rare, it's inherited, a fatal neurological disorder in which no cure exists. |
1:41.2 | So symptoms for most forms of batten disease begin in childhood, |
1:44.9 | according to the National Institute of Health, and they can include loss of vision, seizures, |
1:50.2 | delay, and loss of skills, dementia, and abnormal movements. These symptoms progress over time, |
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