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Cure CMD
Feb 3, 20212 min read
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, 20211 min read
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, 20215 min read
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, 20213 min read
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...
Cure CMD
Dec 10, 20206 min read
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, 20202 min read
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, 20203 min read
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, 20204 min read
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...
Terry Selucky
Oct 21, 20201 min read
You Have the Power to Drive Research
This week, we’ve put a spotlight on families and individuals who share how Cure CMD and our community have made a difference in their...
Cure CMD
Oct 21, 20202 min read
CMD Community Member's TikTok accumulates over 40,000 followers
High school senior brings light to SEPN1 muscular dystrophy on TikTok Wrapping her fingers around her wrist so they touch, folding her...
Liam Miller
Oct 19, 20204 min read
How I Made the Official Cure CMD App
Find the Cure CMD app in both the App Store and Google Play by searching “Cure CMD” It feels like several lifetimes ago at this point...
Terry Selucky
Oct 16, 20201 min read
Cure CMD Volunteer Charlene York Honored as NORD Rare Impact Awardee
Cure CMD would simply not be what it is today without the dedication, hard work, and commitment of our volunteers. They are the reason we...
Rachel Alvarez
Oct 14, 20202 min read
Up close and personal with Cure CMD's Executive Director
How did Rachel Alvarez become part of Cure CMD? I was born with congenital muscular dystrophy, but I didn't learn the details of my...
Lani Knutson, Advocacy Team Leader
Sep 4, 20202 min read
Meet Molly
Meet Molly Wagner, high school student from Florida with CMD. Molly was tasked with creating a research project that not only...
Paul Desaulniers
Sep 4, 20204 min read
Sporting a Love for Sports (Part 1): How it Began
Check out Part 2 of Paul's 2-part series From a young age, I have always had an undying love for sports. My earliest sports memories are...
Luke Hoban
Jul 28, 20202 min read
An Accessible Social Life During Self-Isolation
The COVID-19 pandemic has been brutal, especially in the United States. Both the actual impact of the virus itself and the mental strain...
Mindy Roberts
Jul 6, 20201 min read
CMD Virtual Happy Hour
The most valued and cherished part of the Cure CMD community is you, our members. We rely on and support each other often through trying...
Robin Swallow
Jul 6, 20201 min read
Peer to Peer Conversations: Connecting CMD to CMD
Do you have a question about your experiences with CMD? Do you have advice to help other affected individuals and caregivers? Cure CMD...
Angela Uncles
May 26, 20203 min read
Our Journey with Genetics
My daughter Lumina Jubilee was diagnosed with Walker-Warburg Syndrome--the most severe form of congenital muscular dystrophy--in utero at...
Luke Hoban
May 26, 20203 min read
Managing Caregivers During Quarantine
This week marks two months that I’ve been quarantining at home with my mom. My last excursion before the lock down was to my class at...
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