Be sure to click "always display images from news@curecmd.org" to fully enjoy this update!
August 2023
Newsletter
The Tenacity of Hope is a documentary film by Cure CMD, in partnership with Living in the Light, to showcase members of the congenital muscular dystrophy community and their diverse journeys and perspectives.

Originally created for our 2022 Patient-Focused Drug Development meeting with the FDA, we encourage you to share this film with friends, family, and colleagues, so that they may gain a better understanding of what it means to live with congenital muscular dystrophy.

The Tenacity of Hope and several shorter cuts are available for on-demand viewing on Cure CMD's YouTube Channel.

Our community mourns the loss of a beloved CMD community member and groundbreaking researcher, Professor Jeanette Erdmann. After a 45-year long journey, Jeanette diagnosed herself with CMD, adding this field of research to her portfolio. She brought a new perspective to the field and her dedication to this cause made her an important figure in the CMD community and a respected researcher in the field. Read More.
Our goal is to bring you content relatable for your CMD journey. We invite you to explore our library of webinars on various CMD topics of interest, including education, careers, mental health, driving, and more.
Continuing our Adaptive Series by talking with latest designers & innovators in the fashion world championing inclusivity. Join us Saturday, August 26 at 1PM Eastern (NY) to hear from community members about their favorite brands & products.
To kick off Cure CMD’s 2023 Your Voice Matters Initiative, Legislative Advocacy Team Leader Lani Knutson hosted the first interactive session focused on learning how to share your CMD story with legislators, policymakers, & other change-makers. The recording is available on Cure CMD’s YouTube Channel, so be sure to check it out!
There have been transformative groundbreaking advancements the last couple of weeks toward improving accessible air travel! Have questions about the upcoming FAA re-authorization related to accessible air travel? Lani Knutson, explains where we have been and what's happening now to improve airline travel for those with physical disabilities. Read More.
Every year, Team Cure CMD raises funds for COL6-CMD research in the Million Dollar Bike Ride hosted by the Penn Medicine Orphan Disease Center. This year, the team raised an impressive $110,000, further augmented by $30,000 in matching funds from Penn. From this incredible effort, two, one-year pilot grants will be funded toward promising CMD research.
Cure CMD has been blessed with gifts in many forms over the years from friends, families, and others with a wide variety of connections to us and our affected community. There are a number of ways to benefit Cure CMD through effective planned giving, and, though good estate plans should be reviewed & updated regularly, not all involve writing or changing your will. Learn More.
CMD Community Members
Fan Out to Spread Awareness
Earlier this summer, Cure CMD supported regional opportunities and experiences for our community members.

In honor of MLB’s recognition of Lou Gehrig Day, CMD community members came together for a Brewers game in Milwaukee, WI to raise awareness about neuromuscular conditions.
Cure CMD was also invited to bring community members together in Virginia for a Washington Commanders private practice where they had the opportunity to watch, meet the team, and get memorabilia signed. 

We are so grateful to all of the Brewers and Commanders for their support of our mission to advance research and improve the lives of our affected individuals and families.

If you want to help lead a local event like these, we'd love to hear from you!
Video Game Livestream and Fundraiser
CMD Community Member, Kierra Sunris (TheWheelchairHero), is using her passion for gaming to support Cure CMD & raise funds for research & programming. In honor of Disability Pride Month, Kierra is celebrating with a nightly Twitch stream and fundraiser throughout July. Check out Kierra's livestream and support her fundraiser!
The most exciting and nerve-wracking part of going to college is preparing to stay on campus. This is common sense for anyone going to college, but for a person with CMD, it's a whole process.

Many steps must be taken to ensure the "full college experience" while staying on campus. I will share what I'm doing on my own "living on campus" journey, including some tips and tricks. Read More.
Our Impact Begins With You