2019 SciFam Lay Summary: Stronger Together
A “Triad” of patient advocacy organizations for ultra-rare congenital muscular diseases, Cure CMD (Congenital Muscular Dystrophy), A...
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Lani Knutson, Advocacy Team Leader
- Nov 11, 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 16, 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....
Terry Selucky
- Sep 1, 2019
- 2 min
Board Member Update: Thank You and Farewell Dione! Welcome to Megan, Rob, and Tim.
Dione Kobayashi has been part of the Cure CMD Family for 8+ years, serving on both the Scientific Advisory Board and Board of Directors....
Lani Knutson, Advocacy Team Leader
- Jan 21, 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...
Terry Selucky
- Oct 17, 2018
- 2 min
Welcome New Board Members... Thank You Existing Board!
Cure CMD is delighted to welcome two new additions to the organization’s Board of Directors. They have been working hard over the past...
Terry Selucky
- Aug 18, 2018
- 5 min
2018 Team Cure CMD - Million Dollar Bike Ride Raises $100k for Collagen VI Research
Cure CMD has great news! Earlier this year, we shared about the Million Dollar Bike Ride, an annual event held at PENN Orphan Disease...
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 9, 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)...
Terry Selucky
- Apr 30, 2018
- 1 min
The Results are in! Cure CMD’s First LA Marathon a Great Boon for CMD Research
The second weekend of March brought the CMD community together in a brand-new way this year with the Los Angeles Marathon, when more than...
Rachel Alvarez
- Apr 18, 2018
- 1 min
It's Volunteer Week and here's our next highlight: Susan Lee-Miller
Susan is an "OG" mom who has a son with COL6-CMD. Susan has supported Cure CMD's mission from Day 1. Her ongoing engagement in...
Rachel Alvarez
- Apr 18, 2018
- 1 min
It's Volunteer Week and here's our next highlight: Diane Smith-Hoban
Diane is mother to two wonderful young men, one of whom has COL6-CMD. Diane is one of our "OG" moms - a Cure CMD supporter even before...
Rachel Alvarez
- Apr 17, 2018
- 1 min
It's Volunteer Week and Here's Our Next Highlight: Robin Swallow
Robin's two grandsons were diagnosed with SEPN1-RM in late 2014 after a terrible diagnostic odyssey that led them through three states...
Rachel Alvarez
- Apr 16, 2018
- 1 min
It's Volunteer Week and Here's Our First Highlight: Charlene York
Char has been a mainstay of Cure CMD almost since inception. Mom, wife, sister-in-law and daughter-in-law to four (and counting)...
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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