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Lani Knutson, Advocacy Team Leader
Aug 72 min read
Make Your Voice Heard - Vote!
One of the most important ways you can advocate is to vote.
Kassidy C.
Jun 273 min read
Youth Advocate Attends First Virtual Hill Day
I had the opportunity to kick off my rare advocacy journey and experience my first Capitol Hill Day.
Kelly Berger
Mar 265 min read
My Rare Advocacy Journey
My rare disease advocacy journey started later in life. Like many, I had always felt too overwhelmed and unsure of how to start and was...
Lani Knutson, Advocacy Team Leader
Feb 42 min read
Uncharted Territory
Like most families with a high school junior, we have begun the college discussion at our house. Higher ed is not uncharted territory for...
Cure CMD
Jul 31, 20231 min read
CMD Community Members Fan Out to Spread Awareness
Two recent sporting events supporting CMD awareness and community.
Cure CMD
Jul 31, 20231 min read
Video Game Livestream and Fundraiser
Check out Community Member Kierra Sunris in her nightly Twitch livestream throughout July!
Rachel Alvarez
Jun 13, 20232 min read
Cure CMD Releases New Film About the CMD Experience
Cure CMD's film, The Tenacity of Hope, features the raw and real experiences of those living with congenital muscular dystrophy.
Cure CMD
Feb 7, 20234 min read
Before and After I was Diagnosed: One Breath at a Time
My name is Stephanie Chicas. I am 29 years old. This is the story of how recurrent lung infections and one traumatic day prompted me to...
Rachel Alvarez
Apr 5, 20222 min read
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...
Lani Knutson, Advocacy Team Leader
Feb 27, 20221 min read
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...
Rachel Alvarez
Feb 24, 202211 min read
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, 20214 min read
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 13, 20213 min read
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, 20211 min read
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, 20211 min read
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
May 15, 20213 min read
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 11, 20213 min read
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...
Lani Knutson, Advocacy Team Leader
Apr 30, 20212 min read
STAT Act Aims to Speed Treatments for Rare Disease
Use the template here to urge your Congressperson to support it! In 1983, the U.S. Congress passed The Orphan Drug Act, a law that...
Lani Knutson, Advocacy Team Leader
Apr 5, 20212 min read
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, 20213 min read
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...
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