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September 2020 Newsletter

Cure CMD Awards Six Research Grants Totaling $300,000

Your continued financial support has enabled Cure CMD to grant research funding to six research groups in 2020. Even with COVID-19 presenting an array of new challenges, continuing research toward treatments is our top priority.

An intentional and accessible way to
facilitate 1:1 community support

A light-hearted way to bring our
community together
Thank you to everyone who participated in our August kickoff of two new community outreach programs! Want to get involved? It's not too late to join!
Virtual Happy Hours are up and running! Check out the schedule, grab a drink, and join your next happy hour! There are groups for both affected individuals and parents/caregivers, with a newly added monthly session for our European community members!

If you registered for the new Peer to Peer Conversations program, you should have an introduction email in your inbox. We look forward to hearing your stories as you forge new 1:1 connections!

Have questions? Get in touch!
coming this fall
Understanding complex research publications can be a daunting task. So, while our fiercely dedicated volunteers, Robin Swallow and Charlene York, continue to catalogue and post the latest scientific updates in our CMD Publication Library, we are taking this project one step further.

Under the leadership of our Scientific Director, Dr. Gustavo Dziewczapolski, Cure CMD staff have selected several key CMD scientific publications from each subtype to "translate" into lay-friendly language, making the latest research updates more accessible and understandable. Look for these summaries in our News and Stories section in the coming weeks!
meet some of your
CMD community members
Pulmonary Web Series
created by and for
teens & young adults
Kierra Sunris & Sophie Kim
Last time, we shared that we are hard at work creating KSSK CMD Chats, a web series about pulmonary care, aimed at helping teens and young adults learn more about the importance of proactive pulmonary care to stay healthy and out of the hospital. We are excited to share that all eight episodes have been recorded, and we are now in post-production! We can't wait to share this super cool, entertaining and educational series, coming your way in just a few weeks!
Meet Molly
meet Molly Wagner, high school student with CMD
Molly Wagner
Florida High School Student
Molly was tasked with creating a research project that not only accomplished her school's requirements of the project, but also personally related to her. Since she has CMD, Molly decided to investigate a potential correlation between scoliosis severity and breathing function. Molly hypothesized that, since those with CMD often have both scoliosis and weaker lung function, there would be a strong correlation between the two symptoms. Read More.
Accessible Social Life During Self-Isolation
by Luke Hoban
CMD Community Member
The COVID-19 pandemic has been brutal, especially in the United States. Both the actual impact of the virus itself and the mental strain of the lockdowns around the country have taken their toll. Those of us in the neuromuscular community are particularly affected by both due to the status of many of us as at-risk for COVID-19. But I wanted to talk today about one of the few positive things that has emerged since the pandemic started: the increased prevalence of online socializing. Continue Reading.
Sporting a Love
for Sports
by Paul Desaulniers
CMD Community Member
Part 1: How It Began

From a young age, I have always had an undying love for sports. My earliest sports memories are of my hometown Toronto Blue Jays in the early 90s as they won the World Series in back-to-back seasons. I am not ashamed to say that I had a Kelly Gruber lunchbox (if you don’t know who Kelly Gruber was, stop here and Google him, it’s ok, we’ll wait). Continue Reading.
Who is Gavin Grubbs?
Check out this amazing short film featuring 19-year-old CMD community member Gavin, and his family's annual ski trip to the Adaptive Sports Center in Crested Butte, Colorado.
Making a Difference
  • Donate to support Research & Programming for your CMD subtype
  • Host a virtual fundraiser with your very own branded fundraising page
  • Shop Amazon Smile and earn donations to Cure CMD with every purchase!
  • Earn donations by completing surveys at Survey Monkey
Many thanks to community member Kelly Berger
for her fabulous, custom graphic designs!