On Sunday, August 19, Taylor King will turn 20. On November 1, Laura King Edwards’s inspiring book “Run To The Light” will be published, by Bedazzled Ink. The memoir is an astonishing tale ofCategory Archives: Batten disease
New Book, “Run to the Light,” Chronicles a Journey with Batten Disease
On Sunday, August 19, Taylor King will turn 20. On November 1, Laura King Edwards’s inspiring book “Run To The Light” will be published, by Bedazzled Ink. The memoir is an astonishing tale ofMidsummer Updates at DNA Science
Summer is half over, so I thought I’d update a few posts. EMAN IN LIBERIA A year ago, I frantically wrote about my young friend in Liberia, Emmanuel Gokpolu, and his pleas to help stop Ebola. Emmanuel and his loved ones … Continue reading
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When Celebrities Suddenly Care About Rare Diseases
I have followed, in awe, the tireless efforts of families that have rare genetic diseases to raise awareness and funds. Bake sales and bike races, balls and raffles, exhausting and all-consuming. But these efforts pale when a performer or other … Continue reading
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Posted by in Batten disease, Charlotte and Gwenyth Gray Foundation
No Ice Buckets or Pink Ribbons for Very Rare Genetic Diseases
As enthusiasm for dumping ice on one another fades with autumn and October brings pervasive pink, I wish that attention would turn to families confronting diseases not as well known as ALS and breast cancer. HOW RARE IS RARE? According … Continue reading
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Catching Up With 3 Rare Disease Families
Four-year-old Eliza O’Neill’s viral videos, the subject of my last two blog posts, continue to dominate the news media with another appearance on The Today Show June 17. Hopefully, her family’s fight to fund gene therapy for her …
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