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Community Member Creates Children’s Book Featuring Characters Living With CMD
CMD Community Member, Ashley Burkman, has written a new book, “Move,” featuring characters living with congenital muscular dystrophy.
Kelly Berger & Avery Roberts
45 minutes ago2 min read


Cure CMD’s Kelly Berger Spotlighted by University of Kentucky for Her Advocacy in Rare Disease and Disability Communities
Kelly Berger , Cure CMD’s Community Engagement Manager and tireless advocate for the rare disease and disability communities, was...
jamesimmekus9
15 hours ago1 min read


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.
Kelly Berger & Avery Roberts
Oct 1, 20243 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.
Kelly Berger & Avery Roberts
Aug 14, 20242 min read


Cure CMD Seeks Advocacy Advisory Council Members
Join a newly forming council to help direct legislative priorities for the CMD community.
Lani Knutson, Advocacy Team Leader
Jul 1, 20242 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.
Kassidy C.
Jun 27, 20243 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
Apr 2, 20245 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...
Kelly Berger
Mar 26, 20245 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
Mar 20, 20245 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...
Lani Knutson, Advocacy Team Leader
Feb 5, 20242 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...
Stephanie Chicas
Jan 30, 20244 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...
Celine Rifai
Jan 3, 20242 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...
Lani Knutson, Advocacy Team Leader
Nov 12, 20232 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...
Cure CMD
Jul 31, 20231 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
Lani Knutson, Advocacy Team Leader
Jul 24, 20232 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
Kierra Sunris
Jul 21, 20234 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.
Cure CMD
Jul 12, 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.
Rachel Alvarez
Jun 13, 20232 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...
Cure CMD
Feb 7, 20234 min read
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