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...
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Lani Knutson, Advocacy Team Leader
- Jan 11, 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...
Terry Selucky
- Nov 15, 2019
- 2 min
Liam: A Rare College Experience
Liam Miller is a 21-year-old Computer Science major in his final year at Temple University. Like many 20-somethings, Liam lives on his...
Lani Knutson, Advocacy Team Leader
- Nov 10, 2019
- 3 min
Rare Disease Week November 2020
Rare Disease Week on Capitol Hill is February 25-28, 2020. The Cure CMD Advocacy Team is looking for more members to attend. Want to join...
Terry Selucky
- Nov 1, 2019
- 5 min
Meet Veronica Pini: Researcher, Community Member
“I’m a very curious person,” says Veronica Pini, PhD student who stands just under five feet tall with long blond hair. Her...
Lani Knutson, Advocacy Team Leader
- Sep 15, 2019
- 4 min
Tricky Questions
One evening about a year ago, Tim and I sat down to watch the movie Arrival, based on the short story “Story of Your Life” by Ted Chiang....
Lani Knutson, Advocacy Team Leader
- Jan 20, 2019
- 2 min
I’ve Got a Feeling . . .
At our older son Peter’s 4-month check up, we mentioned to his pediatrician that we noticed that he only turned his head to the left when...
Rob Sunris
- Oct 26, 2018
- 3 min
Community Member Becomes CMD Advocate
Rob Sunris, CMD community member, is father to two great kids, and lives with his family in North Carolina. Global Genes hosted their 7th...
Daniella Slon
- Jun 15, 2018
- 2 min
Good Access = Good Business
Community member, Daniella Slon wrote this article about accessibility in her hometown. We hope this inspires you to investigate your...
Lani Knutson, Advocacy Team Leader
- Jun 8, 2018
- 3 min
Welcome
Dear parent of a newly diagnosed child, When our oldest son was 5 years old, we attended a Muscular Dystrophy Association (MDA)...
Mathea Manley
- Jan 27, 2018
- 3 min
Mathea Manley Representing the CMD Community at Rare Disease Week on Capitol Hill
At the end of next month, Matty will travel to Washington D.C. to represent the CMD community and advocate for congenital muscular...
Megan Meyer
- Jan 27, 2018
- 2 min
Megan Meyer Representing the CMD Community at Rare Disease Week on Capitol Hill
At the end of next month, Megan will travel to Washington D.C. to represent the CMD community and advocate for congenital muscular...
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