• Doenica Palacio

Cure CMD Newsletter - October 2018

Updated: Feb 18

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 same goal: to find treatments and a cure for these ultra-rare conditions. Cure CMD will be collaborating with A Foundation Building Strength and Team Titin!

Having recognized significant overlap in symptomatology, care management, and research

strategies, we know we will reach our goals sooner with collaboration. We look forward to sharing our stories -- our triumphs and our failures -- learning from one another and collectively improving our efforts in research, care and advocacy.

Stay tuned in the coming weeks for more information about venue, agenda, and speakers!

Have you taken the 2019 SciFam Conference Planning Survey?

Cure CMD Board Membership Updates

Make a Difference: Join the Team

CMD Legislative Advocacy

Want to make a difference? Cure CMD has a priority to grow their patient advocacy community to work collectively, so we can amplify our message and ensure that congenital muscular dystrophy patient voices are heard in state and federal government.

All legislators have the same job: to represent their communities (constituents), including the 1 in 10 Americans who are impacted by rare diseases. You don’t have to become a political guru to be a successful advocate; but knowing the basics makes it easier to navigate

the road ahead. Like the medical industry, the legislative field has its own language. Cure CMD will soon be launching an advocacy page on their website, approximately October 1st -

including methods to get involved and resources to broaden your knowledge basis on legislative matters impacting rare disease.

For more information or to get involved, contact: advocacy@curecmd.org

Upcoming advocacy events:

  • October 8, 2018 to December 14, 2018 - Travel stipend application open for Rare Disease Week on Capitol Hill

  • October 15-16, 2018 - National Organization on Rare Disease 2018 Rare Summit: Rare

  • Diseases & Orphan Products Breakthrough Summit

  • February 24-27, 2019 - Rare Disease Week on Capitol Hill

  • February 28, 2019 - Rare Disease Day at National Institutes of Health

Cure CMD Co-Funds Two Additional

Research Projects in 2018

We are thrilled to announce two additional grants - one in LMNA and another in SEPN1 - co-funded with two of our international advocacy partners, Muscular Dystrophy UK and AFM-Telethon. This brings the total to six newly funded projects for CMD in 2018-2019! Many thanks to you, our community of supporters for making these grants possible.

View Cure CMD's 10 Year Funding Portfolio

Check out our blog articles for more information:

Cure CMD & MDUK Cofund LMNA Grant

Cure CMD & AFM Cofund SEPN1 Grant

Share Your Thoughts About Clinical Trial Design and Participation

Please take a few minutes to complete a survey about clinical trial participation. Your answers will help us understand the needs and opinions of the CMD community to design better clinical trials.

Join the Team!

Cure CMD at the 2019 Los Angeles Marathon

March 23-24

Team Cure CMD is honored to be an Official Charity of the 2019 Skechers Performance Los

Angeles Marathon & 5K for the 2nd year in a row!

Join the 2019 team and help us reach our fundraising goal of $50,000 for CMD research!

Learn More & Join the Team

CMD Podcast Learn About CMD CMD Publication Library

Join The Discussion

With over 2,000 active members across a vibrant support network, the CMD community eagerly welcomes you!

Check out the full list of support groups here!

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