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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


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...
Cure CMD
Sep 3, 2021


Congratulations Dr. Erdmann!
Congratulations CMD Researcher and Community Member, Dr. Jeannette Erdmann! We are thrilled to share that CMD researcher and...
Terry Selucky
Aug 31, 2021


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...
Lani Knutson, Advocacy Team Leader
Aug 28, 2021


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...
Luke Hoban
May 20, 2021


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...
Cure CMD
May 15, 2021


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, 2021


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, 2021


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, 2021


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, 2021


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, 2021


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, 2021


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, 2021


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, 2021


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, 2020


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, 2020
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, 2020


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, 2020


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, 2020


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, 2020
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