An Accessible Social Life During Self-Isolation
The COVID-19 pandemic has been brutal, especially in the United States. Both the actual impact of the virus itself and the mental strain...
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Lani Knutson, Advocacy Team Leader
- Jul 23, 2020
- 3 min
You Can Never Go Back
If you are a parent of a child with special needs, a disability, or a rare disease, you’ve probably heard the poem Welcome to Holland. By...
Mindy Roberts
- Jul 6, 2020
- 1 min
CMD Virtual Happy Hour
The most valued and cherished part of the Cure CMD community is you, our members. We rely on and support each other often through trying...
Robin Swallow
- Jul 6, 2020
- 1 min
Peer to Peer Conversations: Connecting CMD to CMD
Do you have a question about your experiences with CMD? Do you have advice to help other affected individuals and caregivers? Cure CMD...
Angela Uncles
- May 26, 2020
- 3 min
Our Journey with Genetics
My daughter Lumina Jubilee was diagnosed with Walker-Warburg Syndrome--the most severe form of congenital muscular dystrophy--in utero at...
Luke Hoban
- May 26, 2020
- 3 min
Managing Caregivers During Quarantine
This week marks two months that I’ve been quarantining at home with my mom. My last excursion before the lock down was to my class at...
Terry Selucky
- May 5, 2020
- 2 min
Giving Tuesday Now
Just like November's #GivingTuesday, #GivingTuesdayNow is not exclusively a fundraising day. It's an opportunity for people around the...
Cure CMD
- May 2, 2020
- 1 min
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, 2020
- 2 min
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, 2020
- 4 min
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, 2020
- 6 min
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...
Rachel Gaffney
- Mar 6, 2020
- 2 min
Disability Benefits with Muscular Dystrophy
How to Qualify for Disability Benefits with Muscular Dystrophy SSD Outreach Specialist The Congenital Muscular Dystrophy (CMD) community...
Terry Selucky
- Feb 14, 2020
- 2 min
Plan a Local CMD-Focused Event
Cure CMD’s next family conference won’t be until Summer 2021, but we encourage smaller, regional groups to meet between now and then - we...
Rachel Alvarez
- Jan 14, 2020
- 1 min
Learn About Proactive Pulmonary Care with Our New Guide
Cure CMD is grateful for the tremendous voluntary contributions made by the authors of the CMD Pulmonary Guide, and their ongoing...
Luke Hoban, Editor in Chief
- Jan 3, 2020
- 2 min
Community Blog Initiative: The First Post
When this decade began, Cure CMD was a fledgling organization, less than two years old. For 14-year-old me, the highlight of those early...
Terry Selucky
- Jan 1, 2020
- 1 min
CMD Mobile App is Live!
Cure CMD has led the design and release of a comprehensive mobile app focused on Congenital Muscular Dystrophy (CMD) -- designed by the...
Lani Knutson, Advocacy Team Leader
- Dec 5, 2019
- 2 min
Rare Disease Week 2020
If you plan to attend, your next steps are: Read Rob Sunris' blog post on last year's Rare Disease Week. Attend the Information Webinar...
Rob Sunris
- Nov 26, 2019
- 2 min
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...
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...
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