MarbleRoad, a DC-based non-profit, is changing the landscape for local D.C. youth battling for their lives as patients with rare diseases. It is Marbleroad’s goal to offer financial assistance and support services for families with complex medical needs.
In August 2011, Genzyme, a leading biotech company, announced the first recipients of the Genzyme Patient Advocacy Leadership (PAL) Awards, in which MarbleRoad was among 11 recipients worldwide. MarbleRoad was awarded an “Empowerment Grant” to hold an online contest within the rare disease community for age-appropriate stories reflecting the perspective of self, sibling, caregiver, or other relevant role in the illness experience, and to help facilitate dialogue and understanding for families facing complex illness.
“The Project is a unique way to bring awareness to rare disease; to support and entertain children receiving care; and to do broad community outreach and education,” said Catherine Calhoun, J.D., a MarbleRoad board member.
MarbleRoad will reach out to the rare community to request submissions of storybooks in two categories. The categories are picture books appropriate for pre-readers ages 0-5 (under 300 words) and early reader books appropriate for children age 5-7 (under 1300 words). Books should illustrate the perspective of self, sibling, caregiver, or other relevant role in the illness experience, to help facilitate dialogue and understanding for families facing complex illness. Through this contest, as many as 10 families may receive flipcams to create a video component to their story, and as many as four families will receive financial assistance to support with medical costs.
For complete details about the Project, including information on how to participate please visit www.MyRareStory.com and follow the hashtag #MyRareStory on Twitter.
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