Being a parent of a child with Duchenne muscular dystrophy (DMD) can be a deeply isolating experience. DMD can cause your child to lag behind his peers across various developmental milestones, especially those involving mobility.
However, here in the United States and across the globe, there are a number of support and advocacy groups that offer support to families struggling with DMD. These organizations offer parents the resources they need to provide the very best care for their child and connect them with the latest in policy and therapeutic developments involving DMD care.
Find more helpful links and resources about DMD
CureDuchenne
CureDuchenne prides itself as an advocacy group that drives forward change by funding groundbreaking research, promoting early diagnosis, and widening treatment access.
CureDuchenne offers education and outreach programs that help bring people together. For example, they host virtual events that allow families to connect in a relaxed and safe environment with others who are on the same journey. In addition, they provide one-day workshops that allow DMD clinicians and experts to share their knowledge regarding the subject. CureDuchenne also hosts two-hour events that focus on disease management and best standards of care.
CureDuchenne offers the unique opportunity for parents to have one-on-one sessions with clinicians, therapists, and support resource coordinators to ensure that they are connected to the support they need.
DuchenneXchange
DuchenneXchange is a dedicated social platform that was designed to provide a safe haven for carers, parents, and patients affected by DMD. Launched in 2018, this program aims to offer an avenue for members of the DMD community to exchange support, information and inspiration with one another.
DuchenneXchange is also a space that provides real-time news and perspectives regarding DMD. These real-time updates include information regarding clinical trials that may yet move the needle of DMD care forward. In addition, DuchenneXchange has a comprehensive directory of trusted clinics and advocacy organizations that members can get in touch with.
Parent Project Muscular Dystrophy
Parent Project Muscular Dystrophy is committed to the fight to end DMD by investing in research and ensuring that every family affected by this disease receives the care they deserve.
On their website, Parent Project Muscular Dystrophy states that they have invested over USD 55 million into DMD research and therapy development so far. In addition, they are proud to have added 10 years to the average lifespan due to advances in DMD care that they have supported.
Parent Project Muscular Dystrophy promotes a number of DMD-related events, including fundraisers, awareness events, races and webinars. Their goal is to make a sizable impact in the lives of those impacted by DMD through advocacy, research and family-based support.
The takeaway
These inspiring organizations are dedicated to the mission of ending DMD and improving the lives of families impacted by this disease. However, there is nothing like having a close knit group of family and friends who will support you through thick and thin. If you are having trouble finding the help you need, do reach out to these amazing organizations who will do their best to get you connected to the right people to help you on your journey.
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