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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...
Cure CMD
May 11, 20213 min read


SciFam 2021 is Around the Corner
An all-virtual conference will cover care and research, and events for kiddos! It’s been way too long since July 2019, when many of us...
Cure CMD
Apr 30, 20212 min read


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...
Lani Knutson, Advocacy Team Leader
Apr 6, 20212 min read


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...
Luke Hoban
Feb 25, 20213 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...
Cure CMD
Feb 3, 20212 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...
Lani Knutson, Advocacy Team Leader
Feb 3, 20211 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...
Terry Selucky
Feb 3, 20215 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...
Luke Hoban
Feb 2, 20213 min read


KSSK CMD Chats: Pulmonary Web Series World Premiere
Registration open now World Premiere + Live Q&A on December 27, 2020 Many people affected by neuromuscular disorders may not know that...
Terry Selucky
Dec 17, 20203 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...
Cure CMD
Dec 10, 20206 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...
Lani Knutson, Advocacy Team Leader
Nov 11, 20202 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...
Kierra Sunris
Oct 31, 20203 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...
Paul Desaulniers
Oct 28, 20204 min read


8th Annual Brothers K Fundraiser to Benefit CMD Research & Programming
Learn what successful family fundraising looks like from veteran CMD Community Members, the Knutsons In 2012, my husband, Tim, and I...
Lani Knutson, Advocacy Team Leader
Oct 23, 20202 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...
Terry Selucky
Oct 22, 20201 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...
Cure CMD
Oct 21, 20202 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...
Liam Miller
Oct 19, 20204 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...
Terry Selucky
Oct 17, 20201 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...
Rachel Alvarez
Oct 14, 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...
Lani Knutson, Advocacy Team Leader
Sep 4, 20202 min read
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