We're heading to the 2026 TCS @nycmarathon ! š Cure CMD is proud to be an Official Charity Partner for the 50th anniversary of the NYC Marathon. On November 1, our Team Cure CMD runners will take on the iconic 5-borough course to raise funds for CMD research and support. Every mile helps move us closer to treatments and hope for families affected by CMD. Follow along, support their fundraising, and stay tuned for ways to join us on race weekend. šš§”
curecmd.org/post/official-partner-2026-nyc-marathon [link in bio to read more] #TeamCureCMD #TCSNYCMarathon
The inaugural @worldcol6myopathyday is coming up on June 6th. Join us in uplifting the ultra-rare neuromuscular community, living with Collagen 6-Related Myopathies! col6.world
An opportunity for artists in the rare disease community! šØ
@sketchnf_ in collaboration with @positiveexposure is showcasing art inspired by the question, What does rare disease mean to you? Pieces will be displayed at Positive Exposureās NYC gallery this July.
Deadline to submit is June 1. Learn more: /jfe/form/SV_cMyNq6mv0Kbvp78
Free Camps and Family Retreats for Children with CMD!
@cck.kentucky (CCK) is a nationally recognized camp in Scottsville, KY that provides free camp experiences for children with lifelong illnesses and disabilities. CCK is fully equipped to support children in a safe, nurturing, and empowering environment.
Campers benefit from 24/7 medical care, specialized staff, and thoughtfully designed programming that helps children build confidence, independence, and meaningful connections with others who truly understand their journey. Register now for an independent summer camp for kids 7-16 with physical disabilities on June 17 ā 20! A weekend retreat for the whole family is also available in October, held in partnership with the Muscular Dystrophy Association.
Read more at: courageouskids.org
Our virtual Ask the Expert series is underway! Attend these subtype specific sessions to get your care & research questions answered by our panel of experts.
Dystroglycanopathies: May 2nd 1pm ET
bit.ly/ExpertaDG
LAMA2: May 9th 11am ET
bit.ly/ExpertLAMA2
LMNA: May 9th 12pm ET
bit.ly/ExpertLMNA
[Register at links in bio]
#AsktheExpert #PanelofExperts #CureCMD #rarediseaseinfo
Weāre cheering on the Maltzman & Swick crew as they get ready to tackle their 3rd annual Charlotte Maltzman Swick Half-Marathon + 5K Beach Run on May 3rd! š£ Good luck at the race & keep crushing those donations, we so appreciate your generous supporters! š curecmd.org/swick
@sandymaltzman@lizzyswicknutrition
Ask the Expert series kicks off Saturday!
š Register & submit your questions to be addressed at the live session.
SELENON: Apr 25 11am ET
bit.ly/ExpertSELENON
COL6: Apr 25 12pm ET
bit.ly/ExpertCOL6
aDG: May 2 1pm ET
bit.ly/ExpertaDG
LAMA2: May 9 11am ET
bit.ly/ExpertLAMA2
LMNA: May 9 12pm ET
bit.ly/ExpertLMNA
[All links to register in bio]
#AsktheExpert #CMDexperts #RareDiseaseDiscussion #CongenitalMuscularDystrophy
Are you registered for our virtual Ask the Expert series!ā
š Sign up today to get your care & research questions answered by our panel of experts.
SELENON: Apr 25 11am ET
bit.ly/ExpertSELENON
COL6: Apr 25 12pm ET
bit.ly/ExpertCOL6
aDG: May 2 1pm ET
bit.ly/ExpertaDG
LAMA2: May 9 11am ET
bit.ly/ExpertLAMA2
LMNA: May 9 12pm ET
bit.ly/ExpertLMNA
[All links in bio to register]
#AsktheExpert #CMDexperts #RareDiseaseCare
Join our virtual Ask the Expert series to get your care & research questions answered by our panel of experts.
š Register now & submit your questions to be addressed at the live session.
SELENON: Apr 25th 11am ET
bit.ly/ExpertSELENON
COL6: Apr 25th 12pm ET
bit.ly/ExpertCOL6
aDG: May 2nd 1pm ET
bit.ly/ExpertaDG
LAMA2: May 9th 11am ET
bit.ly/ExpertLAMA2
LMNA: May 9th 12pm ET
bit.ly/ExpertLMNA
[All links available for signup in bio]
#AsktheExpert #CMDexperts #CMDresearch
In honor of National Doctorās Day, weāre recognizing the hard work, dedication, & contributions of our incredible physicians working to better our CMD community.
Weāre highlighting four of our physician scientists recently featured in our CMD Researcher Spotlight Series.
Watch the full Researcher Series: [link in bio]
#NationalDoctorsDay #RareDisease #healthcareheroes2020
CMD Researcher Spotlight: Payam Mohassel, MD | Fund 2026 CMD Research & Programs
Dr. Payam Mohassel, MD, is Co-Director of the Johns Hopkins Myositis Center and Associate Professor of Neurology at Johns Hopkins University School of Medicine, where he specializes in neuromuscular disorders including congenital muscular dystrophies.
In this video, Dr. Mohassel shares what continued support and funding could mean for the CMD community. He explains that institutions like Cure CMD play a critical role in helping researchers stay focused in the field while also attracting scientists from other disciplines to apply their expertise to CMD.
He emphasizes the importance of balancing funding between deepening our understanding of disease mechanisms and refining therapiesāand highlights the long-term impact of investing in early-career investigators who can dedicate their careers to advancing CMD research.
Learn more or donate at curecmd.org/2025 [link in bio]
š¢ Important research update for the CMD community!
Cure CMD shares an update on Dr. Carsten Bƶnnemannās transition to St. Jude Childrenās Research Hospital and the continued leadership of CMD research at the National Institutes of Health under Dr. Reghan Foley.
This new chapter in CMD research strengthens collaboration and advances progress toward future therapies for congenital muscle disease. š§¬
š Learn what this means for the future of CMD research: /post/bonnemann-transitions-to-st-jude [link in bio]
![We're heading to the 2026 TCS @nycmarathon! Cure CMD is proud to be an Official Charity Partner for the 50th anniversary of the NYC Marathon. On November 1, our Team Cure CMD runners will take on the iconic 5-borough course to raise funds for CMD research and support. Every mile helps move us closer to treatments and hope for families affected by CMD. Follow along, support their fundraising, and stay tuned for ways to join us on race weekend. curecmd.org/post/official-partner-2026-nyc-marathon [link in bio to read more] #TeamCureCMD #TCSNYCMarathon](https://sp1.picnob.com/p/pt_6727732849274067506562_0_35f8b03ea60faa148880348f321c7a02.jpg?o=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&h=4a4344a357caa8ba06b3122f7c9b303a)
![Our virtual Ask the Expert series is underway! Attend these subtype specific sessions to get your care & research questions answered by our panel of experts.Dystroglycanopathies: May 2nd 1pm ETbit.ly/ExpertaDGLAMA2: May 9th 11am ETbit.ly/ExpertLAMA2LMNA: May 9th 12pm ETbit.ly/ExpertLMNA[Register at links in bio]#AsktheExpert #PanelofExperts #CureCMD #rarediseaseinfo](https://sp1.picnob.com/p/pt_6739486462492749463239_0_21f840e08b4af41aa8be973e5cbc7f7c.jpg?o=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&h=32cc27611e6a1c162ab74ec3e7ed8087)
![Ask the Expert series kicks off Saturday! Register & submit your questions to be addressed at the live session.SELENON: Apr 25 11am ETbit.ly/ExpertSELENONCOL6: Apr 25 12pm ETbit.ly/ExpertCOL6aDG: May 2 1pm ETbit.ly/ExpertaDGLAMA2: May 9 11am ETbit.ly/ExpertLAMA2LMNA: May 9 12pm ETbit.ly/ExpertLMNA[All links to register in bio]#AsktheExpert #CMDexperts #RareDiseaseDiscussion #CongenitalMuscularDystrophy](https://sp1.picnob.com/p/pt_6739311120543741374272_0_d1ecaa31b5be55a9711480f7bad3b532.jpg?o=aHR0cHM6Ly9zY29udGVudC1sZ2EzLTIuY2RuaW5zdGFncmFtLmNvbS92L3QzOS4zMDgwOC02LzY3MjA4NjE4Ml8xNDE0OTUzMzk0MDAzMDM3Xzc3MDYyMjEyNDgxNDkzNDY1N19uLmpwZz9zdHA9YzAuMjA1LjE2MzguMTYzOGFfZHN0LWpwZ19lMzVfczY0MHg2NDBfc2gyLjA4X3R0NiZfbmNfaHQ9c2NvbnRlbnQtbGdhMy0yLmNkbmluc3RhZ3JhbS5jb20mX25jX2NhdD0xMDUmX25jX29jPVE2Y1oyZ0VLbmxZNElRMDhjTzZkNHlSNno3NENvRm9EQUdTZUR2R0dWY291bkZWMFB4Zl9VMkdaMDJ5MkVLR3lTanhIVUl3UWFDZjRTUEdlZFFURWZsNnBzV3RSJl9uY19vaGM9TVhaaXBCOEZRdlVRN2tOdndGQU1QdXEmX25jX2dpZD1zWnkxanAwQnlVT0hJSTdvNFF4dUxnJmVkbT1BUFU4OUZBQUFBQUEmY2NiPTctNSZvaD0wMF9BZjVnVjE5Sm1ka2RtQXlKQ1k0SDNja1VvRVZLTF80NDAtQmhfbGV2WDZUNk9nJm9lPTZBMTA0MDExJl9uY19zaWQ9YmMwYzJj&h=1a2608e5ce8b868ea47fafefcb9997c7)
![Are you registered for our virtual Ask the Expert series! Sign up today to get your care & research questions answered by our panel of experts.SELENON: Apr 25 11am ETbit.ly/ExpertSELENONCOL6: Apr 25 12pm ETbit.ly/ExpertCOL6aDG: May 2 1pm ETbit.ly/ExpertaDGLAMA2: May 9 11am ETbit.ly/ExpertLAMA2LMNA: May 9 12pm ETbit.ly/ExpertLMNA[All links in bio to register]#AsktheExpert #CMDexperts #RareDiseaseCare](https://sp1.picnob.com/p/pt_6739334915432949216768_0_072b177ce9e06bbbb3abdb68a0f467aa.jpg?o=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&h=9ab5c1c0e4cf3757be07e1482ac43c24)
![Join our virtual Ask the Expert series to get your care & research questions answered by our panel of experts. Register now & submit your questions to be addressed at the live session.SELENON: Apr 25th 11am ETbit.ly/ExpertSELENONCOL6: Apr 25th 12pm ETbit.ly/ExpertCOL6aDG: May 2nd 1pm ETbit.ly/ExpertaDGLAMA2: May 9th 11am ETbit.ly/ExpertLAMA2LMNA: May 9th 12pm ETbit.ly/ExpertLMNA[All links available for signup in bio]#AsktheExpert #CMDexperts #CMDresearch](https://sp1.picnob.com/p/pt_6747233424267049175354_0_8ac34b27c4457facdc11cde708fa8fd2.jpg?o=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&h=412966c7a6b414a443666efc5b612654)
![In honor of National Doctorās Day, weāre recognizing the hard work, dedication, & contributions of our incredible physicians working to better our CMD community.Weāre highlighting four of our physician scientists recently featured in our CMD Researcher Spotlight Series.Watch the full Researcher Series: [link in bio]#NationalDoctorsDay #RareDisease #healthcareheroes2020](https://sp1.picnob.com/p/pt_6747632841245449491112_0_ee7a3998e4b4e7a938547fe0622f9d2d.jpg?o=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&h=c965cb37082788f6e6fa37cb0e4dd392)
![CMD Researcher Spotlight: Payam Mohassel, MD | Fund 2026 CMD Research & ProgramsDr. Payam Mohassel, MD, is Co-Director of the Johns Hopkins Myositis Center and Associate Professor of Neurology at Johns Hopkins University School of Medicine, where he specializes in neuromuscular disorders including congenital muscular dystrophies.In this video, Dr. Mohassel shares what continued support and funding could mean for the CMD community. He explains that institutions like Cure CMD play a critical role in helping researchers stay focused in the field while also attracting scientists from other disciplines to apply their expertise to CMD.He emphasizes the importance of balancing funding between deepening our understanding of disease mechanisms and refining therapiesāand highlights the long-term impact of investing in early-career investigators who can dedicate their careers to advancing CMD research.Learn more or donate at curecmd.org/2025 [link in bio]](https://sp1.picnob.com/p/pt_6747582125614113103961_0_77c0cb0f66c0256bb8c8a77118ea0c97.jpg?o=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&h=5218a7b55800c2d7aecd0fa495fd19f3)
![Important research update for the CMD community!Cure CMD shares an update on Dr. Carsten Bƶnnemannās transition to St. Jude Childrenās Research Hospital and the continued leadership of CMD research at the National Institutes of Health under Dr. Reghan Foley.This new chapter in CMD research strengthens collaboration and advances progress toward future therapies for congenital muscle disease. Learn what this means for the future of CMD research: /post/bonnemann-transitions-to-st-jude [link in bio]](https://sp1.picnob.com/p/pt_6742262820676368206040_0_f4a4e1b96f53c683256354479817d9d9.jpg?o=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&h=22dc2750db690b4f515b8f9d05f621cc)
