PPMD and Jett Foundation Among Groups Gearing Up for Sept. 7, World Duchenne Awareness Day
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With an emphasis on standards of care, groups such as the Parent Project Muscular Dystrophy and the Jett Foundation are gearing up for Sept. 7, World Duchenne Awareness Day (WDAD) 2018.
Organizations are recommending a host of ways to raise awareness for Duchenne muscular dystrophy, including fundraising activities, sharing efforts on social media, and getting local governments involved.
Citing a need to ensure that Duchenne patients worldwide benefit from the best practices of the best clinicians globally, the theme of this year’s WDAD is standards of care.
It is also crucial that information available to families is understandable and based on the latest research, according to a WDAD news release.
This year’s WDAD activities will include conferences to update clinicians and other healthcare professionals, publication of the updated Duchenne Muscular Dystrophy Family Guide, and release of a series of videos designed to help youngsters with DMD learn how to advocate for their own health.
Groups such as Parent Project Muscular Dystrophy (PPMD) are recommending ways to join the fight against DMD. Those include getting schools or workplaces to establish online fundraising sites, creating Fundraising to End Duchenne events, asking state or local governments to issue proclamations recognizing World Duchenne Awareness Day, and planning a 1K Race to End Duchenne at the school of children living with Duchenne.
The races will afford opportunities to educate students on life with Duchenne so that that they can better understand what these children deal with on a daily basis.
Other suggestions include hosting a college football Coach to Cure Muscular Dystrophy tailgating or watch party on Sept. 29, and restocking supplies of PPMD merchandise so that awareness can be raised all month long.
The organization is recommending that efforts be shared on social media using the hashtag #EndDuchenne. It also suggests using PPMD’s Duchenne Action Month Facebook Frame for activity photos.
The Jett Foundation, whose mission it is to increase global awareness of Duchenne in order to raise research funds, is inviting participation in World Duchenne Awareness Day in Cambridge, Massachusetts. Register here. The event will include a speaking program and family-friendly activities.
In addition to donating to the foundation, it also suggests becoming a Jett Foundation Community Ambassador. Those interested may visit this page.
The foundation also encourages those affected by Duchenne to decorate homes, cars and offices in red, the global color for “stop.” Its World Duchenne Awareness Day shirts may be purchased online here.
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