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Cure CMD Named Official Charity Partner of the 2026 TCS New York City Marathon
Cure CMD announces its selection as an Official Charity Partner of the 2026 TCS New York City Marathon and introduces Team Cure CMD.
Avery Roberts
2 days ago


Finding Our Voice: Testifying for Medicaid and the Power of Sharing Our Story
Ashley Burkman shares how testifying for Medicaid highlighted the daily reality of CMD caregiving and how honest storytelling can drive advocacy and change.
Ashley Burkman
Apr 7


Carsten Bönnemann Transitions to St. Jude Children's Research Hospital in Memphis, USA
Cure CMD shares an important research update regarding Dr. Carsten Bönnemann’s move to St. Jude Children’s Research Hospital and ongoing CMD research at the National Institutes of Health led by Dr. Reghan Foley.
Avery Roberts
Mar 13


Cure CMD Collaborates with MDA and Cure ADSSL1 to fund Beggs Lab for SELENON Research
Cure CMD is proud to partner with the Muscular Dystrophy Association and Cure ADSSL1 to support groundbreaking research at the Beggs Laboratory at Boston Children’s Hospital. This collaborative project will use next-generation genomic tools and AAV-based gene therapies to better understand disease mechanisms and advance potential treatments for SELENON-Related Myopathy, demonstrating how partnership across the rare disease community can accelerate progress toward meaningful t
Cure CMD
Mar 6


Gene Therapy Shows Promise for LAMA2-Related Dystrophy
Researchers at the University of Basel are developing a gene therapy that could potentially treat those living with LAMA2-Related Dystrophy.
Cure CMD
Feb 26


Community Member Selected for Accessible Camino Pilgrimage
It Started With an Idea I’m Angela, and I live with SELENON-Related Myopathy. As a member of the CMD community, I have had the privilege of being connected to others living with similar neuromuscular diseases. Being part of this community has continually reminded me that while CMD can feel isolating at times, we are never truly alone. In 2017, I attended an MDA-sponsored premiere of I’ll Push You , a documentary that follows two best friends, Justin and Patrick. Justin has a
Angela Maccarrone
Feb 19


LMNA-CMD Added to SSA's Compassionate Allowance List
We're thrilled to share that after several years following Cure CMD's submission to the Social Security Administration requesting the addition of LMNA-CMD to the Compassionate Allowance List, this CMD subtype is now included. The CAL list is SSA's way of fast-tracking help for people with the most severe medical diagnoses. Conditions on this list are considered serious enough to qualify for disability benefits and your application will be moved to the front of the line. Speci
Rachel Alvarez
Sep 10, 2025
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