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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


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, 2020


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, 2020


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, 2020


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, 2020


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, 2020


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, 2020


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...
Paul Desaulniers
Sep 4, 2020


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...
Luke Hoban
Jul 28, 2020


You Can Never Go Back
If you are a parent of a child with special needs, a disability, or a rare disease, you’ve probably heard the poem Welcome to Holland. By...
Lani Knutson, Advocacy Team Leader
Jul 23, 2020


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...
Mindy Roberts
Jul 6, 2020


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...
Robin Swallow
Jul 6, 2020


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...
Angela Uncles
May 26, 2020


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...
Luke Hoban
May 26, 2020


Giving Tuesday Now
Just like November's #GivingTuesday, #GivingTuesdayNow is not exclusively a fundraising day. It's an opportunity for people around the...
Terry Selucky
May 5, 2020


Quick News For You
Head’s Up in Your Community What’s your Communication Style? Cure CMD wants to know more about how you like to engage with us. Will you...
Cure CMD
May 2, 2020


Rare Disease Week - 2020 Report
The Cure CMD Advocacy Team was represented by 13 advocates at Rare Disease Week in Washington, D.C. during the last week of February....
Lani Knutson, Advocacy Team Leader
May 2, 2020
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