September is Duchenne Action Month

September is Duchenne Action Month
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September is Duchenne Action Month, an awareness, fund-raising, and educational campaign supporting people with Duchenne muscular dystrophy (DMD)

Hosted by Parent Project Muscular Dystrophy (PPMD), each week of the month is organized around a different theme, with scheduled events, as well as various resources and social media tools. A schedule is available on the Action Month homepage.

The first week‘s theme is “Empowerment,” which focuses on providing DMD patients and family members with knowledge to manage a new diagnosis, return to school, and to navigate the COVID-19 pandemic.

Whether school is virtual or in-person, PPMD offers tools to help make the transition a successful one. These include guides for parents and teachers to optimize the learning environment, and a series of webinars that address the Duchenne community’s school-related questions and concerns. Additional resources can be found here.

PPMD provides a link to its COVID-19 information center, which includes fact sheets, FAQs with recommendations, links to the latest research, and free online activities for the whole family.

Among the available resources for the first week is a request to create or update a Duchenne Registry account. The registry provides a way to support DMD research with anonymous patient data from around the world, and to share information regarding clinical trials.

People can connect with the broader Duchenne community online, using the #EndDuchenne hashtag and by tagging @ParentProjectMD.

Other weeks throughout the month will be organized around the themes of “Awareness,” “Resiliency,” “Community,” and “Hope for the Future.”

Both during Duchenne Action Month and afterward, PPMD encourages everyone to be involved in helping the DMD community. Its website contains numerous links to actions such as donating and fundraising, to advocacy, events, and other sponsored activities.

The global Duchenne community will come together Sept. 7 for World Duchenne Awareness Day. Since its declaration in 2014, cities around the world have grown increasingly involved. The European Parliament has  offered its support, recognizing the value of this global event intended to raise awareness for people with DMD and Becker muscular dystrophy.

Pope Francis has been dedicating a special communication to the Duchenne community on this day each year. Multiple celebrities have joined the cause and monuments have been lit in celebration of the day.

Each World Duchenne Awareness Day also is organized around a theme and that for 2020 it is “Duchenne and the Brain.”

“What we plea for is early screening, appropriate testing, more research and better care on this aspect of the disease. This is really needed in order to have everyone reach their full potential,” the World Duchenne Organization stated on the event’s webiste.

People also can help raise awareness by adding PPMD’s World Duchenne Awareness Day frame to their profile picture on Facebook.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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José is a science news writer with a PhD in Neuroscience from Universidade of Porto, in Portugal. He has also studied Biochemistry at Universidade do Porto and was a postdoctoral associate at Weill Cornell Medicine, in New York, and at The University of Western Ontario in London, Ontario, Canada. His work has ranged from the association of central cardiovascular and pain control to the neurobiological basis of hypertension, and the molecular pathways driving Alzheimer’s disease.
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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