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Cure CMD
May 2, 20201 min read
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, 20202 min read
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, 20204 min read
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, 20206 min read
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, 20202 min read
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 11, 20201 min read
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, 20191 min read
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, 20192 min read
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, 20193 min read
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, 20195 min read
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, 20194 min read
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, 20192 min read
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...
Cure CMD
Oct 26, 20183 min read
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...
Cure CMD
Jun 15, 20182 min read
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, 20183 min read
Welcome
Dear parent of a newly diagnosed child, When our oldest son was 5 years old, we attended a Muscular Dystrophy Association (MDA)...
Cure CMD
Jan 27, 20183 min read
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...
Cure CMD
Jan 27, 20182 min read
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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