Be sure to click "always display images from outreach@curecmd.org" to fully enjoy this update! |
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Amidst lockdowns and uprisings, the Cure CMD community came together to achieve so much in the last year. Check out our 2020 Impact Report to see what we did together and how your engagement, feedback, and support truly made a difference. |
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Pulmonary Care Web Series Premiere
Terry Selucky
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In December, Cure CMD premiered the brand-new web series, KSSK CMD Chats, focused on pulmonary care and hosted by CMD-affected teens, Sophie and Kierra.
The premiere included a lively 45 minute Q&A with some of our expert guests from the 8-episode series. You can view the series and the live premiere on our YouTube channel. We will continue to roll out the remaining episodes over the coming weeks. Be sure to subscribe to our channel to be notified when new episodes are released.
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Making Respiratory
Muscle Training Fun?
Lani Knutson
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Designed by a Dutch respiratory therapist, GroovTube uses video games to make respiratory muscle training fun and to create a better cough for those with neuromuscular disease.
The GroovTube device syncs with your iPad and allows the user to interact with apps specifically designed for the device.
For example, blow into the GroovTube and make the dragon maneuver its way through the towers. Watch it in action.
GroovTube is available for purchase through the company’s website. As always, consult your care team before starting any new therapy.
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A Passion for Power Hockey
Paul Desaulniers
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There are some days that leave a lasting mark on your life. Years later you’re able to look back and pinpoint the day it all changed. For me, that day was Sunday, November 29, 1998. It was a mundane autumn Sunday, but for me it would end up being a catalyst to things I could never imagine. It would lead to friendships, experiences, travel, and ignite a passion that remains stronger than ever. What happened on that fateful day 22 years ago? One word: Power Hockey. Read More
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Three Days Teaching Future Doctors
Luke Hoban
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CMD has given me many things throughout my life. A wonderful community and the ability to play wheelchair hockey are at the top of the list. It’s also given me a lot of experience in doctor’s offices! A few weeks ago, I had the opportunity to put that knowledge to good use. I was hired for three days to work as a Standardized Patient at Temple University’s medical school as part of a module they were doing with second-year medical students about patients with disabilities. Read More
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Pandemic Academics
Kierra Sunris
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For the past 8 months, much of the United States has been in various stages of lockdown to prevent COVID-19 from spreading and harming any more people. But now many schools are beginning to reopen to help kids still get the best education possible despite the pandemic. Let’s talk about that.
I attend high school in Union County, North Carolina. They made the decision to allow kids to go to school one day a week. Read More
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One Day At A Time
The Curley Family
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CMD is a new road for our family. Our son, Finn, was diagnosed at 14 months of age, on November 18, 2020, with SELENON/SEPN1 Related Myopathy, one of the subtypes of congenital muscular dystrophy. To say we were shocked is an understatement. Like many, there is not anyone in my husband's or my family who has any known genetic disorders, but in hindsight, Finn started showing signs from the beginning. We immediately immersed ourselves in research, we started talking to doctors, joined research studies, you name it! Read More
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Jaclyn: Scientist, Affected Individual and Advocate
Terry Selucky
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Jaclyn Prystupa was always interested in science. In school, biology was her favorite subject, and the Saskatchewan Science Centre was one of her favorite places to visit. Yet it was Jaclyn’s love of horses that led her to study genetics and genomics -- and it was her CMD diagnosis that sparked her to research her own condition.
Jaclyn is currently the SELENON-RM Patient Advocate and Digital Consultant at the Beggs Laboratory at Boston Children’s Hospital (where she was also previously the Research Technologist).We met with Jaclyn to learn about her work, her insights, and her thoughts about how other affected individuals and families can be partners in CMD research.
How did you ultimately refine your interest to focus on genetics?
Jaclyn: My interest in horses is ultimately what led me down the path to working in the field of genetics and genomics. Read more
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Standing Up for Myself & Surviving COVID-19
Nikki Meade
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When the pandemic hit, I knew I was high-risk, but I also knew I was doing everything I could to be prepared for it. I have a cough assist machine, breathing support, and great doctors; I almost felt like this is what I have been preparing for. It’s game time!
When my parents and husband both tested positive and I was showing symptoms, I knew it was my turn and started keeping a close eye on my oxygen levels. I also contacted Rachel Alvarez at Cure CMD and we were in close contact for the next couple of days. Rachel immediately suggested increasing use of cough assist and using breathing support more than just at night so that my body would be able to rest. She also kindly contacted Drs. Mayer and Foley, and would report back with their suggestions. We had a game plan and I was then able to contact my care team with updated care standards to assure we were doing everything possible. Read more
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Virtual Happy Hour Bingo! |
On December 20, Community Outreach Team members Avery Roberts and Kelly Berger hosted our first-ever Virtual Bingo as part of our CMD Happy Hour series. With more than 31 participants and three lucky winners of some cool Cure CMD swag, this event offers another fun way to connect virtually with your community.
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