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October 2020 Newsletter
Prizes for 1st, 2nd & 3rd place!
Between October 26 and November 1, share you or your child's Halloween costumes with the Cure CMD Community and be entered into our Halloween Costume Contest!
Post photos on Facebook or Instagram, tag @CureCMD, use hashtags #CureCMD and #2020aRareHalloween

Cure CMD staff & board members will judge entries and announce the winners on Tuesday, November 3. We can't wait to see those costumes!
The CMDIR has launched on a new and improved platform!

If you have already registered in the CMDIR, your profile has been transferred to the new platform, but we need you to claim it so that you may retain access. You should have received an email with instructions on how to claim your profile. If the link in your email has expired, you can visit and click "Forgot password" at the top of the page to reconnect.

If you haven't yet registered in the CMDIR, now is the time! Help us make CMD a more accessible, intriguing space for innovative scientists and industry by taking part in this vital research project.

Want to learn more? Check out the getting started videos, hosted by CMDIR team member, Sarah Foye, and visit the registry at Questions? Email us at
Introducing the newest member of Cure CMD’s team: Kara Ansotegui, focused on donor relations and philanthropy.

Dear Friends of Cure CMD,

I am thrilled to be joining this wonderful organization, and all of the extraordinarily caring individuals that are part of this community. In my short time with the organization I have come to appreciate and respect how much I have to learn, and I'm happily jumping in with both feet.

My set of professional experiences include a number of positions in the nonprofit industry. I have worked for organizations such as CARE USA and March of Dimes as well as universities including Georgia Tech, Georgia State, and the University of Montana Foundation. Most recently, I worked at March of Dimes as their Senior Director of Centralized Fundraising, building both a midlevel and centralized fundraising program. I also have extensive experience building stewardship programs, which I put in place at CARE and the University of Montana Foundation.

I look forward to utilizing my fundraising and stewardship knowledge in order to help Cure CMD continue to fund this important work, and hope to partner with many of you in the future as we invest in expanding these efforts.
At the start of this year, we launched the Cure CMD Community Blog to more deeply involve YOU, our CMD community. Since the first post launched on January 3 by Editor-in-Chief and longtime community member Luke Hoban, we’ve published 30 articles on our blog from 11 different writers. We’ve been telling the stories of both affected individuals and family members all year long, and would love to hear from you!

We’re so proud to reflect the Cure CMD community, but we’re looking for more writers to participate! Please let us know if you have ideas for written pieces or vlogs. And, there’s no experience necessary. Even if you’ve never written a blog post like this before, Luke can help you turn your idea into a great addition to our site. 

Some topics you could cover, just to jog your brain (not an all-inclusive list!): 

  • Stories specific to your stage of life (job-hunting, choosing a college, junior high, etc.)
  • Mental or physical health during the pandemic
  • Other stories that relate, at least indirectly, to living life with your or your child's ultra-rare condition

Learn more about being a Cure CMD Blog Contributor, and register to begin contributing! We look forward to highlighting your voice! #CMDVoices

Now, let's check out the latest contributor submissions!

High School Senior Shares on TikTok
Chloe Pasman
Wrapping her fingers around her wrist so they touch, folding her sweater sleeve around her upper arm and showing the size of her leggings were all actions senior Chloe Pasman included in one of the first TikTok videos she posted on her account about the impact the disease, SEPN1 muscular dystrophy, has on her body. This video garnered over 47,000 views. Today, Pasman’s TikTok account has over 40,000 followers. Read More.
How I Made the
Cure CMD App
Liam Miller
It feels like several lifetimes ago at this point when I was sitting in the Introduction to iOS Application Development course at Temple University. It was towards the end of my junior year of college and I was finally starting to find an interesting branch of the computer science major. I was not sure how I was going to pursue this new discovery further, but I knew I was into it. Read More.
Cure CMD would simply not be what it is today without the dedication, hard work, and commitment of our volunteers. They are the reason we can continue to function the way we do!

Speaking of… we want to give a very special shout-out to long-time Cure CMD volunteer, Charlene York, who received a Rare Impact Award from the National Organization for Rare Disorders (NORD) on October 9th! Charlene is a Volunteer Ambassador for the Ohio Rare Action Network and has been a volunteer with Cure CMD almost since its inception. Since then, she’s given countless hours to help curate the CMDIR, to create and curate the publication library, to manage travel for all clinical trials and conferences, to vet funding opportunities for Cure CMD, and more.

Charlene: we are so grateful to have you as part of our community. Thank you for everything you do, and for inspiring us to work as hard as you do. Next time we see each other, the cosmos are on us!
8th Annual Brothers K Fundraiser Oct 25
Peter & Michael
In 2012, my husband, Tim, and I looked at our young boys who had been diagnosed with a neuromuscular disease and said, “What’s next?” We were still sorting out their care and determining the best way forward. We didn’t even have a genetic diagnosis yet, but we aren’t ones to sit still. We came up with the idea to host an event to raise money for research. We knew then and continue to believe that research is where our hope lies for their future. Read More.
Up close and personal with Cure CMD's ED
Rachel, Age 6
I was born with congenital muscular dystrophy, but I didn't learn the details of my condition until I was 38. In 2007, I was in the ER for the third time in as many months for untreated respiratory failure. As medical professionals worked to bring my CO2 levels down, assess the damage, and figure out a treatment plan, a nearby ER physician overheard, "adult female with congenital muscular dystrophy" and her ears perked up... Read More.
This week, we’ve put a spotlight on families and individuals who share how Cure CMD and our community have made a difference in their lives. Check out Facebook, Instagram, and Twitter to hear from community members Kierra, Shawnessy, Dave and Stella, Peter and Michael, and Kelly (who creates many of the amazing graphics you see in newsletters and social media!).

Also, check out a special message from Executive Director Rachel Alvarez and see some of her adorable baby pictures!

As we move solidly into fall, and transition into the giving season, please consider Cure CMD in your philanthropic plans. We are the only U.S. nonprofit organization dedicated solely to advancing research and improving the quality of life for those impacted by CMD. Our commitment to this work is unmatched: we dedicate 90% of all subtype funding to research and programming. We are truly made stronger by each and every one of you!
An intentional and accessible way to
facilitate 1:1 community support

A light-hearted way to bring our
community together