2020 Rare Disease Week: Join the Team

As part of the rare disease community, we are all advocates. We push for inclusion and accommodations at schools, teach our doctors about our conditions, and try to stop parking on the white hashed area in the accessible parking spaces. Rare Disease Week allows us to advocate at the highest levels of the U.S. government to push for the more prominent issues such as healthcare, medical research through the NIH, and fast-tracking treatments through the FDA. Inspired by other Cure CMD community members, I participated in the 2019 Rare Disease Week to have a voice in these issues, and I highly encourage you to join us in 2020. Rare Disease Week is a well-run event by the EveryLife Foundation

Attention Content Creators: Introducing Cure CMD’s Community Blog Initiative - Content for You, by Y

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 and, coupled with your feedback, are continuing to make Cure CMD the place where you are represented, you are advocated for, and where you feel at home. To that end, we’re launching the Community Blog Initiative to shine a spotlight on the CMD community - a place for sharing thoughts and issues you care about and sparking both awareness and conversations. Beginning in 2020 and led by Editor-in-Chief, community member Luke Hoban, we’re offering $50 per blog post of approximately 500-1,00 words, for up to 50 (approved) posts throughout the year. Your posts wi

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 own and is making the most of the college adventure. He's smart, has a razor-sharp wit, and has tons of friends. Last year, his hockey team won the championship! Liam also has Congenital Muscular Dystrophy. He hasn't been able to walk on his own since the age of seven, and uses a power wheelchair to get around. It was nerve-wracking for the whole family to send Liam off to college, knowing that he would have to rely on himself and his nurses to make sure he stayed healthy and kept his grades up, but it has been totally worth it. Cure CMD got the inside scoop

2019 SciFam Lay Summary: Stronger Together

A “Triad” of patient advocacy organizations for ultra-rare congenital muscular diseases, Cure CMD (Congenital Muscular Dystrophy), A Foundation Building Strength for Nemaline Myopathy, and Team Titin (Titinopathy) successfully convened in a tight but enlightening scientific and family agenda. We are tremendously satisfied with the outcome – matching our original objectives of bringing more than 80 researchers together, from basic to translational to clinical backgrounds, to synergize collective knowledge and experience to accelerate the bench-to-bedside pipeline toward clinical trials and to share their expertise with the patient community. The symposium began with a comprehensive lecture by

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 us in D.C in February? If you plan to go, please Let Lani Knutson (Cure CMD Advocacy Team Lead) know that you plan to attend. Apply for a travel stipend from RDLA. The deadline is December 2. Check the RDLA website for instructions. When completing the application for the travel stipend, please indicate: Organization: Cure CMD Relationship to Organization: Community Member, Patient Advocate Rare Disease Affiliation: Congenital Muscular Dystrophy Relation to Rare Disease Community: Affected Individual/Family Member of Affected Individual Explanation: Tell y

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 Italian-accented English lilts as she tells her story. “I have always wanted to do a job related to the discovery of what’s unknown.” As a rare disease researcher, Pini belongs to a small but elite community of biological explorers. A gift of a small microscope on her eighth birthday is part of what launched her on this path, but her unique story has also played a part. “The story of my diagnosis is a bit tricky,” says Pini, who not only studies neuromuscular disease, but is also personally affected by it. She had normal developmental milestones early on, but her pare

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