Affected Individuals Flourish with an Overseas Exchange Opportunity
CMD affected individuals are given the opportunity to visit overseas through a foreign exchange arranged by community members.
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Kelly Berger & Avery Roberts
Aug 142 min read
Community Member Produces Groundbreaking Film
CMD Community Member & Executive Producer, Steve Way, releases groundbreaking film, Good Bad Things, in 50 AMC Theatres across the U.S.
Lani Knutson, Advocacy Team Leader
Jul 12 min read
Cure CMD Seeks Advocacy Advisory Council Members
Join a newly forming council to help direct legislative priorities for the CMD community.
Kassidy C.
Jun 273 min read
Youth Advocate Attends First Virtual Hill Day
I had the opportunity to kick off my rare advocacy journey and experience my first Capitol Hill Day.
Kelly Berger
Apr 25 min read
Never Stop Driving: Cure CMD's Dedication to Community Member Simon Cantos
Honoring community member Simon Cantos and his legacy in the congenital muscular dystrophy community.
Kelly Berger
Mar 265 min read
My Rare Advocacy Journey
My rare disease advocacy journey started later in life. Like many, I had always felt too overwhelmed and unsure of how to start and was...
Lani Knutson, Advocacy Team Leader
Mar 195 min read
2024 Rare Disease Week Recap
Cure CMD’s Advocacy Lead, Lani Knutson, provides a recap of events for Rare Disease Week on Capitol, February 25 — 29, 2024.
Lani Knutson, Advocacy Team Leader
Feb 42 min read
Uncharted Territory
Like most families with a high school junior, we have begun the college discussion at our house. Higher ed is not uncharted territory for...
Stephanie Chicas
Jan 304 min read
10 Energy Conservation *Tips: My Workout Journey With CMD
I am 30 and I have been living with SELENON-Related Myopathy my whole life. This rare form of muscular dystrophy has affected me in many...
Celine Rifai
Jan 32 min read
Adaptive Sailing on the Chesapeake Bay
On September 29, I woke up eagerly because I was going sailing with my family, and not just any kind of sailing, adaptive sailing. The...
Lani Knutson, Advocacy Team Leader
Nov 11, 20232 min read
Parental Guilt
For all the unintentionally insensitive and thoughtless things people have said to me over the years, no one has ever asked me the...
Cure CMD
Jul 31, 20231 min read
CMD Community Members Fan Out to Spread Awareness
Two recent sporting events supporting CMD awareness and community.
Cure CMD
Jul 31, 20231 min read
Watch The Tenacity of Hope
The Tenacity of Hope is a documentary film by Cure CMD, in partnership with Living in the Light, to showcase members of the congenital...
Lani Knutson, Advocacy Team Leader
Jul 24, 20232 min read
Accessible Air Travel
By September 30, 2023, Congress must reauthorize the Federal Aviation Act (FAA). Changes can be made when an act is reauthorized, and advoca
Kierra Sunris
Jul 21, 20234 min read
The College Journey, Volume 1: Living On Campus
Many steps must be taken to ensure you get the "full college experience" that other kids get while staying on campus. Here, I will share wha
Cure CMD
Jul 11, 20232 min read
A Profound Void in our Hearts: The Loss of Prof. Jeanette Erdmann
Prof. Jeanette Erdmann, CMD Researcher and CMD-affected individual passed away unexpectedly after a tragic fall.
Rachel Alvarez
Jun 13, 20232 min read
Cure CMD Releases New Film About the CMD Experience
Cure CMD's film, The Tenacity of Hope, features the raw and real experiences of those living with congenital muscular dystrophy.
Cure CMD
Feb 7, 20234 min read
Before and After I was Diagnosed: One Breath at a Time
My name is Stephanie Chicas. I am 29 years old. This is the story of how recurrent lung infections and one traumatic day prompted me to...
Rachel Alvarez
Apr 5, 20222 min read
FDA Patient-Focused Drug Development Initiative: Affected Community Testimonials at 2022 SciFam
Progress toward treatments for CMD is a battle fought on several fronts. Clinicians work to improve diagnostics, care, and understand the...
Terry Selucky
Apr 4, 20222 min read
Cure CMD Awarded Additional Year of Funding through the Rare As One Network
Cure CMD is thrilled to announce a third year of funding from the Chan-Zuckerberg Initiative’s Rare As One Network, an effort to...
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