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...
top of page
Search
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...
Luke Hoban
- Jul 28, 2020
- 2 min
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, 2020
- 1 min
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, 2020
- 1 min
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, 2020
- 3 min
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, 2020
- 3 min
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...
Cure CMD
- May 2, 2020
- 1 min
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...
Lani Knutson, Advocacy Team Leader
- May 2, 2020
- 2 min
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....
Kierra Sunris
- Apr 7, 2020
- 4 min
Academic Advocacy
The transition between middle school and high school is a very exciting, but nerve- wracking time for all individuals who are affected by...
Sarah Foye
- Mar 11, 2020
- 6 min
College Search
AJ’s senior yearbook quote: “Never let your circumstances define you.” At age 13 months our son, AJ, was diagnosed with a rare muscle...
Lani Knutson, Advocacy Team Leader
- Feb 15, 2020
- 2 min
2020 Rare Disease Day: Show Your Stripes
In the Congenital Muscular Dystrophy (CMD) world, we know our disease is rare. And if you look at the numbers in each subtype, the groups...
Lani Knutson, Advocacy Team Leader
- Jan 12, 2020
- 1 min
Cure CMD Advocacy Update - January 2020
Rare Disease Week 2020 If you are planning to attend Rare Disease Week on February, check out the Next Steps as you prepare to travel to...
Cure CMD
- Nov 16, 2019
- 1 min
Attention Content Creators: Introducing Cure CMD’s Community Blog Initiative: For You, by You
As you know, 2019 has been a big year for the CMD community. As 2019 SciFam recedes from view, we’re gathering the lessons we’ve learned...
bottom of page