Be sure to click "always display images from [email protected]" to fully enjoy this update! |
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September 2021 Newsletter |
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2021 SciFam Content
Now Available on YouTube
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Thanks to everyone who participated in our 2021 Virtual SciFam Conference. if you didn't get a chance to attend or watch recordings in the conference portal, most of the content is now available on Cure CMD's YouTube Channel. Check back soon for transcribed versions in English, Spanish and Turkish. |
Interested in helping transcribe this content to your native language?
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Did you miss it?
Back to School Webinar
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Expert tips on:
- Masks & Safety
- Managing Stress
- School Accommodations
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Save the Date:
Using Your Voice for Change
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Advocacy comes in many forms, from legislation to work, to travel. Join us October 9 and learn how to use your voice for change!
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Congratulations Dr. Jeanette Erdmann! |
We are thrilled to share that CMD researcher and COL6-affected community member, Dr. Jeanette Erdmann, has been named to the prestigious German Academy of Science Leopoldina!
Joining the Leopoldina is considered one of the highest honors among scientists. This society originated in 1652 to promote a scientifically enlightened culture and responsible application of scientific insight, and today has 1,600 members from nearly all branches of science. Read More.
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Co-Pay Assistance Programs |
Ohioans have been focused on protecting their family from the COVID crisis. But that is not the only public health crisis facing thousands of families like mine who are also impacted by rare diseases.
My daughter has a rare form of congenital muscular dystrophy, which wasn’t diagnosed until she was 16, after years of having her symptoms dismissed as growing pains. Once she was diagnosed, we found out that my husband and members of his family also have the same disease. Read More.
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Legislative Advocacy Update |
Want to advocate on behalf of yourself or a loved one with CMD? Right now, several proposed U.S. bills exist that would benefit the CMD community as well as the larger rare disease community.
It takes moments to fill out a few quick forms that automatically send letters to your legislators. You can also contact your members of Congress directly and ask them to co-sponsor and/or support these bills. Learn More.
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Benefits of Legacy Giving |
Everyone has something they are passionate about. If you are, or know, an individual affected by congenital muscular dystrophy, Cure CMD may have become one of those passions. Did you know that you can ensure your support for Cure CMD continues after your lifetime while also receiving tax benefits for yourself?
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Young Adult Programming Now Available |
Spearheaded by affected teens Avery Roberts and Kierra Sunris, Young Adult programming focuses on content that assists in the transition of care to a more independent journey of health, and provides a mix of social and fun content.
“Being young adults with a rare disease ourselves, we think about our future a lot. We want to help the CMD community navigate and interpret these often tricky concepts with useful tips and tricks for transitioning into this new and sometimes intimidating chapter of our lives.” Learn More.
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Calling All Artists: Cure CMD Creative Contest for Affected Individuals |
Open to all individuals affected by a neuromuscular condition age 6 and older, the Creative Contest seeks to celebrate all the paint-y, write-y, music-y, performance-y, artist-y work that our awesome community does!
Submit your original art pieces until Friday, September 10, 2021, check out the rules and calendar, and upload your creations! We can’t wait to see what you create! Learn More and submit your creation!
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Cure CMD Documentary Featured on The Disorder Channel |
We are thrilled to announce that the 2019 Cure CMD-produced documentary, Liam: A Rare College Experience, is now streaming on The Disorder Channel!
Liam is a 12-minute dive into what college is like for a young adult with CMD, and what it took to get there. Learn More.
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Caught Up on the Latest KSSK Pulmonary Episodes? |
Our one-of-a-kind, educational, and entertaining web series demystifies pulmonary best care practices for those impacted by neuromuscular disorders.
Each episode packs a ton of useful information and conversation about one of the most important aspects of proactive care in just 15-20 minutes. Check it out!
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