FDA Patient-Focused Drug Development Initiative: Affected Community Testimonials at 2022 SciFam
Progress toward treatments for CMD is a battle fought on several fronts. Clinicians work to improve diagnostics, care, and understand the...
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Lani Knutson, Advocacy Team Leader
- Apr 4, 2022
- 1 min
Two-Minute Advocacy: Ensuring Telehealth Coverage
Telehealth services have been critical to maintaining safe and consistent access to health care for patients with rare diseases such as...
Lani Knutson, Advocacy Team Leader
- Feb 28, 2022
- 1 min
So You’re Telling Me There’s A Chance
Happy Rare Disease Day! Started in 2008, Rare Disease Day is an international event focused on bringing awareness to the more than 7,000...
Avery Roberts
- Feb 25, 2022
- 4 min
Annie Live!: My First-Hand Experience in a Television Production
I remember the night I was asked to be a part of the production, I was so thrilled, I almost cried! I’ll never forget what one of my...
Rachel Alvarez
- Feb 24, 2022
- 11 min
Rare Disease Day Reflections: My Rare Disease Journey
Executive Director Rachel Alvarez shares a deep dive into her history as a rare disease patient, and what it means to lead Cure CMD.
Lani Knutson, Advocacy Team Leader
- Oct 18, 2021
- 4 min
Adrenaline Hangover
When Michael woke up with a fever and sore throat last Monday, I assumed it was strep throat. This kid can get strep just by thinking...
Lani Knutson, Advocacy Team Leader
- Sep 14, 2021
- 3 min
How Much? How Little?
Each fall, I email my sons’ teachers to give an overview of their Congenital Muscular Dystrophy (CMD). I explain the differences they can...
Terry Selucky
- Sep 3, 2021
- 1 min
Calling All Artists: Cure CMD’s Creative Contest for Affected Individuals
Open to all individuals affected by a neuromuscular condition age 6 and older, the Creative Contest seeks to celebrate all the painty,...
Terry Selucky
- Sep 3, 2021
- 1 min
Liam: A Rare College Experience Featured On The Disorder Channel
We are thrilled to announce that the 2019 Cure CMD-produced documentary, Liam: A Rare College Experience, is now streaming on The...
Cure CMD
- Sep 3, 2021
- 3 min
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...
Luke Hoban
- May 20, 2021
- 2 min
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...
Simon Cantos
- May 15, 2021
- 3 min
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...
Simon Cantos
- May 11, 2021
- 3 min
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
- Apr 30, 2021
- 2 min
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...
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...
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