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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, 20251 min read


Rare Across America 2025 Recap
In August, seven CMD advocates from Wisconsin, Ohio, and New York joined Rare Across America, connecting with Members of Congress to spotlight critical issues affecting the rare disease community. Discussions focused on restoring the Rare Pediatric Disease PRV Program, improving Medicaid access for kids needing out-of-state care, and protecting NIH and FDA research funding. Advocates shared personal stories and called for bipartisan support to ensure progress in treatment dev
Lani Knutson
Sep 9, 20252 min read


Stronger Together: Highlights from 2025 SciFam
Over 340 attendees gathered in Philadelphia for the 2025 Scientific & Family Conference, uniting families, clinicians, and researchers to share stories, advance care, and spark new collaborations. Highlights included 60 sessions, Kids Camp, young adult meetups, and the Scientific Symposium.
James Immekus
Sep 8, 20254 min read


2025 Creative Contest Returns for its 5th Year
Cure CMD’s Creative Contest celebrates its 5th year of providing an outlet for people living with CMD and other neuromuscular conditions to promote the creative expressions of their stories through visual, physical, or performance art.
Kelly Berger & Avery Roberts
Sep 8, 20252 min read
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