Blog | Cure CMD

Nov 12, 20196 min read

2019 SciFam Lay Summary: Stronger Together

A “Triad” of patient advocacy organizations for ultra-rare congenital muscular diseases, Cure CMD (Congenital Muscular Dystrophy), A...

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...

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...

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....

Sep 1, 20192 min read

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....

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...

Oct 31, 20182 min read

Cure CMD Co-Funds SEPN1 Research Project with AFM

Cure CMD (Congenital Muscular Dystrophy) is eager to announce a co-funded grant, in partnership with AFM-Téléthon, for Dr. Esther Zito’s...

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...

Oct 17, 20182 min read

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...

Sep 13, 20182 min read

Cure CMD Co-Funds LMNA Research Grant with Muscular Dystrophy UK

Cure CMD (Congenital Muscular Dystrophy) is pleased to announce the recipient of a grant co-funded with Muscular Dystrophy UK: Dr. Giséle...

Aug 18, 20185 min read

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...

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...