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.
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Lani Knutson, Advocacy Team Leader
- Jul 1
- 2 min
Cure CMD Seeks Advocacy Advisory Council Members
Join a newly forming council to help direct legislative priorities for the CMD community.
Kassidy C.
- Jun 27
- 3 min
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 2
- 5 min
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 26
- 5 min
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 20
- 5 min
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 5
- 2 min
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 30
- 4 min
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 3
- 2 min
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 12, 2023
- 2 min
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, 2023
- 1 min
CMD Community Members Fan Out to Spread Awareness
Two recent sporting events supporting CMD awareness and community.
Cure CMD
- Jul 31, 2023
- 1 min
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, 2023
- 2 min
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, 2023
- 4 min
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 12, 2023
- 2 min
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, 2023
- 2 min
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, 2023
- 4 min
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, 2022
- 2 min
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, 2022
- 2 min
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...
Lani Knutson, Advocacy Team Leader
- Feb 28, 2022
- 1 min
So You’re Telling Me There’s A Chance
Happy Rare Disease Day! Started in 2008, Rare Disease Day is an international event focused on bringing awareness to the more than 7,000...
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