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...
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Lani Knutson, Advocacy Team Leader
- Feb 27, 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...
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 13, 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...
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
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...
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...
Lani Knutson, Advocacy Team Leader
- Apr 30, 2021
- 2 min
STAT Act Aims to Speed Treatments for Rare Disease
Use the template here to urge your Congressperson to support it! In 1983, the U.S. Congress passed The Orphan Drug Act, a law that...
Lani Knutson, Advocacy Team Leader
- Apr 5, 2021
- 2 min
Six Things
Six Things I Have Learned While Raising Two Boys with SEPN1 Related Myopathy The questions “Why?” and “Why me?” cannot be answered. Some...
Luke Hoban
- Feb 25, 2021
- 3 min
Getting my COVID vaccine
When various COVID-19 vaccines started to roll out in December 2020, I was thrilled like many people. I also knew that there was going to...
Curley Family
- Feb 3, 2021
- 2 min
Taking It One Day At A Time
We recently met with members of the Curley family, new members of the Cure CMD community. We asked them to share their story with you! If...
Lani Knutson, Advocacy Team Leader
- Feb 3, 2021
- 1 min
Making Respiratory Muscle Training Fun?
Any type of therapy (physical, speech, occupational, etc.) is more engaging for children when approached as playtime, especially if it...
Terry Selucky
- Feb 3, 2021
- 5 min
Meet Jaclyn: Scientist, Affected Individual and Advocate
Jaclyn Prystupa was always interested in science. In school, biology was her favorite subject, and the Saskatchewan Science Centre was...
Luke Hoban
- Feb 1, 2021
- 3 min
Three Days of Teaching Future Doctors
CMD has given me many things throughout my life: A wonderful community and the ability to play wheelchair hockey are at the top of the...
Nikki Meade
- Dec 10, 2020
- 6 min
How Standing Up for Myself Helped Me Survive COVID-19
I was born in 1976 and my parents always knew some things were different, but my physical anomalies were always blamed on a birth...
Lani Knutson, Advocacy Team Leader
- Nov 10, 2020
- 2 min
Holding our Breath
We wind our way up the parking ramp at Children’s of Wisconsin every six months. After parking, we make the long trek on foot through the...
Kierra Sunris
- Oct 31, 2020
- 3 min
Pandemic Academics
It is that time of the century, about twenty years in, for our regularly scheduled once-in-a-lifetime global pandemic. A pandemic is a...
Paul Desaulniers
- Oct 28, 2020
- 4 min
Sporting a Love for Sports (Part 2) - A Passion for Power Hockey
Check out Part 1 of Paul's 2-part series There are some days that leave a lasting mark on your life. Years later you’re able to look back...
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