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!
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
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: firstname.lastname@example.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.
Check out our blog articles for more information:
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
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
Join The Discussion
With over 2,000 active members across a vibrant support network, the CMD community eagerly welcomes you!