We believe we’re going to find a cure to stop this horrible disease and save our children and hopefully have the path for other families and children after us.
(PRWEB) February 29, 2016
The print component of “Rare Diseases” is distributed within today’s weekday edition of USA Today, with a circulation of approximately 250,000 copies and an estimated readership of 750,000. The digital component is distributed nationally, through a vast social media strategy and across a network of top news sites and partner outlets. To export the digital version of the campaign, click here.
Hollywood movie producer, Gordon Gray, his wife Kristen, and two daughters, Charlotte and Gwenyth, grace the cover of the print publication. Charlotte and Gwenyth Gray both have Late Infantile Batten Disease, a rare genetically inherited neurodegenerative brain disorder. In an exclusive interview Gordon and Kristen discuss the challenges that they face in bringing their daughters to treatment, and the proactive role they are taking to make it happen. Gordon says, “We’ve had to generate a lot of attention so we could raise the money and really from scratch, fund the treatment.”
With over 7,000 rare diseases affecting over 30 million Americans, it is up to the rare disease community to pave the way for a bright future for patients and their families. “The rare disease is definitely coming together because there isn’t enough attention on these disease,” Kristen remarks. “We believe we’re going to find a cure to stop this horrible disease and save our children and hopefully have the path for other families and children after us.”
This campaign was made possible with the support of the National organization for Rare Disorders, Global Genes, The ALS Association, Rare Disease United Foundation, EveryLife Foundation, BioPontis Alliance for Rare Diseases, Charlotte & Gwenyth Gray Foundation, Aegerion Pharmaceuticals, Shire, Amicus Therapeutics, HealthiVibe, Incyte, Cytokinetics, Boehringer Ingelheim and more.
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