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...
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Lani Knutson, Advocacy Team Leader
- Apr 6, 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 2, 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...
Terry Selucky
- Dec 17, 2020
- 3 min
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...
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 11, 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...
Lani Knutson, Advocacy Team Leader
- Oct 23, 2020
- 2 min
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...
Terry Selucky
- Oct 22, 2020
- 1 min
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...
Judy Feng & Alex Stolyarov
- Oct 21, 2020
- 2 min
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, 2020
- 4 min
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 17, 2020
- 1 min
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, 2020
- 2 min
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, 2020
- 2 min
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, 2020
- 4 min
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...
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