Community Member Becomes CMD Advocate

Rob Sunris, CMD community member, is father to two great kids, and lives with his family in North Carolina. Global Genes hosted their 7th annual Rare Patient Advocacy Summit this October 3rd and 4th in Irvine, California. This was my first conference of this type, and I was thrilled to attend as a father of a child with congenital muscular dystrophy. I went to gain a deeper understanding of the science and research taking place to help me be a better fundraiser and advocate. I left with so much more than I expected and now have a solid plan for how I can drive action in our rare disease community. And the icing on the cake was the chance to meet some of the wonderful Cure CMD staff in person

Welcome New Board Members... Thank You Existing Board!

Cure CMD is delighted to welcome two new additions to the organization’s Board of Directors. They have been working hard over the past several years to support Cure CMD’s research and community-building efforts, and we are fortunate to have them step up their leadership in this way. We look forward to our work together! Sara Bloomfield has been an active member of the Cure CMD community since 2012, when her daughter was diagnosed with LAMA2-CMD at six months old. Since then, she has been a continuous advocate for affected individuals, helping to raise funds, building a social media presence, writing letters of support of Cure CMD’s work, and participating in public awareness efforts. Sarah h

Cure CMD Newsletter - October 2018

We're Celebrating Fall in the Northern Hemisphere! In this Issue: CMD SciFam: Save the Date! Welcome Sarala Waller, Director of Development Cure CMD Board Membership Updates CMD Legislative Advocacy: Join the Team! New Research Projects in LMNA & SEPN1 Share Your Thoughts About Clinical Trial Design & Participation 2019 Los Angeles Marathon: Join the Team! Your Community Resources/Join the Discussion Save the Date! Stronger Together: 2019 CMD Scientific & Family Conference July 25-28 • Chicago USA • Venue TBA Scientific Meeting: July 25-26, 2019 Family Conference: July 27-28, 2019 Please join us for this first-ever event, joining three neuromuscular disease communities all working toward the

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Cure CMD is U.S. registered 501(c)(3) non-profit organization. Donations are tax deductible to the
extent allowable by law.  U.S. Federal Tax ID: 26-2640975