Our Mission
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Cure CMD’s mission is to advance research toward treatments for the congenital muscular dystrophies and empower those living with CMD through engagement and support of our community.
Our Values
Tenacious | Affirming | Collaborative
Proactive | Community-Led
As anyone with CMD knows, hope is tenacious
About
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Cure CMD was founded in 2008 by three parents whose children have Congenital Muscular Dystrophy, a group of rare genetic disorders defined by muscle weakness at or soon after birth. Mutations in one of more than 30 genes cause muscle tissue to break down faster than the body can repair it.
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A person with CMD may have a variety of neurological and physical impairments, including the inability to walk, respiratory weakness, scoliosis, joint contractures, feeding and cardiac complications, and for some, profound cognitive impairment.
Through close collaboration with researchers, clinicians, industry, advocates, families, and generous supporters, we have made an incredible impact in the lives of those living with CMD:
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Provide funding for $4 million in research grants
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Launch two clinical trials and support natural history studies in the five primary subtypes of CMD
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Grow the Congenital Muscle Disease International Registry to more than 3,500 participants worldwide
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Host Scientific & Family Conferences attended by more than 500 stakeholders from around the world
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Create more than 300 hours of videos content through live and pre-recorded webinars and in-person events, to engage, educate and support the affected community, including a film about the CMD Journey called The Tenacity of Hope, and a pulmonary care web series
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Expand community engagement by 400% over the last five years
Looking Forward
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As we look to the future, we are focused on a bold strategy that includes:
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Providing supportive content and connections that are responsive to the affected community's needs, and ensures they have access to optimized care and the tools to advocate for that care
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Increasing funding dedicated to scientific inquiry, aligned with our research strategy
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Growing the scientific community by encouraging young scientists to focus their talents on CMD, and stay in our research space even after they've left their mentors to grow their careers
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Expanding outreach efforts to identify and support the global CMD population where they are today
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Partnering with other organizations that share a similar mission to ensure we aren't reinventing the wheel, but are learning from one another to promote wellness across the neuromuscular space and beyond