CMD Community Members Fan Out to Spread Awareness
Two recent sporting events supporting CMD awareness and community.
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Cure CMD
- Jul 31
- 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
- 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
- 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
- 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
- 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.
Stephanie Chicas
- Feb 7
- 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...
Avery Roberts
- Feb 25, 2022
- 4 min
Annie Live!: My First-Hand Experience in a Television Production
I remember the night I was asked to be a part of the production, I was so thrilled, I almost cried! I’ll never forget what one of my...
Rachel Alvarez
- Feb 24, 2022
- 11 min
Rare Disease Day Reflections: My Rare Disease Journey
Executive Director Rachel Alvarez shares a deep dive into her history as a rare disease patient, and what it means to lead Cure CMD.
Lani Knutson, Advocacy Team Leader
- Oct 18, 2021
- 4 min
Adrenaline Hangover
When Michael woke up with a fever and sore throat last Monday, I assumed it was strep throat. This kid can get strep just by thinking...
Lani Knutson, Advocacy Team Leader
- Sep 14, 2021
- 3 min
How Much? How Little?
Each fall, I email my sons’ teachers to give an overview of their Congenital Muscular Dystrophy (CMD). I explain the differences they can...
Rachel Alvarez
- Sep 3, 2021
- 1 min
2021 SciFam Content Now Available on YouTube
Thanks to everyone who participated in our 2021 Virtual SciFam Conference. If you didn't get a chance to attend or watch recordings in...
Terry Selucky
- Sep 3, 2021
- 1 min
Calling All Artists: Cure CMD’s Creative Contest for Affected Individuals
Open to all individuals affected by a neuromuscular condition age 6 and older, the Creative Contest seeks to celebrate all the painty,...
Terry Selucky
- Sep 3, 2021
- 1 min
CMD Young Adult Programming Now Available
If you’re reading this, you probably already know that a key part of Cure CMD’s mission is to help support the CMD community through...
Lani Knutson, Advocacy Team Leader
- Sep 3, 2021
- 2 min
Five-Minute Advocacy Update
Want to advocate on behalf of yourself or a loved one with CMD? Right now, several proposed U.S. bills exist that would benefit the CMD...
Terry Selucky
- Sep 3, 2021
- 1 min
Liam: A Rare College Experience Featured On The Disorder Channel
We are thrilled to announce that the 2019 Cure CMD-produced documentary, Liam: A Rare College Experience, is now streaming on The...
Cure CMD
- Sep 3, 2021
- 2 min
The Benefits of Legacy Giving
Everyone has something they are passionate about. If you are, or know, an individual affected by congenital muscular dystrophy, Cure CMD...
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