A Call to Action for all NH Constituents!
Seacoast, New Hampshire- 8th grader Rebecca Gowing wanted to make a difference in her community. After learning that her sister’s classmate and friend, Lucas Currier, had Duchenne Muscular Dystrophy she took action to help raise funds and spread awareness, creating Art for A Cure for DMD. What started as an idea for a fundraiser has evolved into the state of New Hampshire recognizing the need to raise awareness for Duchenne Muscular Dystrophy. Governor Maggie Hassan will officially declare Friday, April 5th Duchenne Muscular Dystrophy Day in New Hampshire. This day of awareness is coinciding with the opening of the Art for a Cure for DMD event, honoring both Lucas and third grader Cameron Yurik who also has Duchenne.
Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures. Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs.
What can you do?
Help us continue to spread awareness in NH and beyond- Text, Tag, Talk.
In order to further the efforts started by Rebecca we need your help! We have come up with some easy ways you can get involved and help spread awareness to your community.
An easy way to raise funds for research, it only takes a minute. Text “CURE” to 90999 to donate $5 to Duchenne research.
Spread awareness about NH’s declaration by tagging yourself and sharing this pic on Facebook on Friday. (PPMD will post this picture Thurs into Friday. Be sure to like PPMD's Facebook page)
We applaud the Governor of New Hampshire for recognizing the need for increased awareness of Duchenne. Be sure to thank the Governor and tell her your story or connection to Duchenne.
PPMD is currently working to pass the MD-CARE Act Amendments of 2013 – an important piece of federal legislation that has increased the lifespan of patients with Duchenne by ten years. We are grateful to Congresswoman Shea-Porter for being an early Cosponsor of the bill! We still need the support of both Senator Ayotte and Shaheen and US House Represenative Kuster.
Please contact the members of your delegation and ask them to cosponsor the bill today! www.parentprojectmd.org/takeaction2013
Ryan Fischer, Director of Outreach & Advocacy
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