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May 2021 Newsletter
2021 SciFam is Just Around the Corner!
This year's virtual conference will cover both general and disorder-specific topics on care and research, and includes a program for kids of all ages!
It’s been way too long since July 2019, when many of us were able to be together, breathing the same air (!) in Chicago. For the safety of our community, we’re waiting one more year to meet again in-person, but we can all be together and get the latest updates through an all-virtual SciFam 2021!

Happening May 21-22, 2021 SciFam will feature many of the best parts of our regular event, all from your favorite chair. We’re packing live content into a few hours each day over two days (Friday and Saturday), when we’ll bring the world’s top CMD experts into your home to discuss disorder-specific research and care, and we will lead plenary discussions on topics such as the Therapeutic Toolbox and Clinical Trial Readiness - What Does It mean?

But wait! There’s more. 

We’ll also have pre-recorded bonus sessions on topics such as advocacy, special needs financial planning, transitioning to adulthood, the CMD research publication library, a Photo Booth, and more! We'll also be hosting a poster exhibit hall where researchers and organizations can share the work they're doing.

Of course, we haven’t forgotten the kiddos. We have an amazing Kids Program lined up for Saturday, featuring a Virtual Petting Zoo, Trivia, Karaoke, and a Magic & Comedy Show. 

Register now for the 2021 Virtual SciFam, hosted by Cure CMD and Team Titin. The cost for affected individuals and their families is $35 per login—that means $35 per connection, no matter how many individuals are watching from a single location. Once you register, you can submit your research and care questions for our experts.

You won’t want to miss this opportunity to come together, learn, and connect. If you are unable to participate live, registering will still grant you access to the conference portal through August 31, 2021 where you can watch (and re-watch) all conference content at your leisure.
Refreshing Logo, Isn’t It? 
Spruced up in time for 2021 Virtual SciFam!
Noticed anything new about the Cure CMD logo? 

Last year’s challenges asked us to look and listen closer than ever: to the world, to our health experts, and most of all, to you, our community—what we are hearing and seeing from you, and what we’re not. We wanted our logo to be more user-friendly (the former version had an oblong shape that often hung off an edge and didn’t always play well with other media), and to reflect our commitment to a global, inclusive present and future. 

We gave the logo a small refresh, retaining key aspects such as the DNA graphic and our bold pops of orange (energy, optimism) and blue (reliability, commitment, collaboration). The DNA graphic is still key to who we are, and represents the genetic nature of congenital muscular dystrophy. The two-toned circle represents Cure CMD's global effort to bring together all CMD stakeholders toward the same goal of identifying treatments and improving the lives of those living with CMD. 

We are so excited to share this updated logo design with you, which not only will fit better into any physical or digital space, but also reflects a doubling-down on what we stand for: commitment to YOU, our global Cure CMD family, and incorporating your voices and reflecting all of you in all we do.

What do you think? Let us know!
Six Things I Learned
A Mom's Perspective
Community member Lani Knutson has an amazing blog called Our SEPN1 Life and we wanted to share a recent post that really moved us. It’s called “Six Things” and it’s a list of lessons she has learned raising two boys with CMD. Regardless of your or your child's subtype, this list resonates! Check it out.

At 2021 SciFam, we’ll be sharing a special episode of the Two Rare Mama Bears podcast, featuring Lani as a guest! Be sure to check out the full library of episodes and download on your favorite podcast app!
Getting My COVID Vaccine
Luke Hoban, Editor in Chief
When various COVID-19 vaccines started to roll out in December 2020, I was thrilled like many people. I also knew that there was going to be a rush of people wanting to be vaccinated as soon as possible, and that it would be pretty difficult to get a dose early on. This became even more clear once it was revealed that the approved vaccines both required two doses for maximum efficiency.

In January, my state began distributing more and more vaccines to pharmacies statewide. Read More.
CDC’s Milestone Tracker
Record Your Child’s Development
When my kids were born, the age of smartphones and apps was just beginning. I would have loved to have the CDC’s Milestone Tracker when they were babies and toddlers! This app helps busy parents track how their child plays, learns, speaks, acts, and moves using simple milestone checklists, and you can set up appointment reminders. Learn More.
Advocating for the STAT Act
New Legislation: Speeding Therapy Access Today
Thanks to the work of the Rare Disease Legislative Caucus and rare disease advocates from all over the US, the Speeding Therapy Access Today (STAT) Act of 2021 (H.R. 1730/S. 670) was introduced in both the U.S. Senate and House last month to address the speed in which treatments are being developed. Learn More.
Virtual Happy Hour Trivia Event This Sunday
Join us Sunday, May 2 for
Cure CMD Trivia!
If you've joined one of our virtual bingo events, then you already know about the fun and laughter that ensues! Now we're going to change it up a bit with occasional trivia event. The first one is THIS SUNDAY - so be sure to register!
KSSK CMD Chats: Pulmonary Web Series
All-new episodes released, more to come!
Caught up on the latest episodes of KSSK CMD Chats? This innovative, educational, and entertaining web series is hosted by two CMD-affected teens and features some of the world’s top experts in neuromuscular pulmonary care. Haven't seen it yet? Check it out!