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...
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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...
Cure CMD
- Sep 3, 2021
- 3 min
Co-pay Assistance Programs Essential to Patients and Caregivers
Ohioans have been focused on protecting their family from the COVID crisis. But that is not the only public health crisis facing...
Terry Selucky
- Aug 31, 2021
- 2 min
Congratulations Dr. Erdmann!
Congratulations CMD Researcher and Community Member, Dr. Jeannette Erdmann! We are thrilled to share that CMD researcher and...
Lani Knutson, Advocacy Team Leader
- Aug 28, 2021
- 3 min
The Asterisk
About a month ago, I contacted the boys’ pediatrician to get her advice about sending them back to school this fall since our youngest is...
Luke Hoban
- May 20, 2021
- 2 min
Looking Forward to SciFam
My first Cure CMD conference memories actually pre-date Cure CMD and the conferences themselves. In the early 2000s, when I was around...
Simon Cantos
- May 15, 2021
- 3 min
I Am No Sob Story
Living with Congenital Muscular Dystrophy (CMD) can sometimes feel like a battle with an invincible enemy that's inside of me all the...
Simon Cantos
- May 11, 2021
- 3 min
That Defining Moment by Simon Cantos
Everyone has a defining moment in their lives that shapes their entire future. For me, that moment came when I was about 6 years old. I...
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