Updated: Feb 18
Registration open now World Premiere + Live Q&A on December 27, 2020
Many people affected by neuromuscular disorders may not know that aggressive, proactive pulmonary care is critical to avoiding breathing-related illnesses, hospitalizations, and long-term complications. Affected individuals who are not getting the respiratory support they need may experience morning headaches, restless sleep, daytime fatigue, changes in appetite, and an inability to concentrate. To avoid these issues, it is important to consult a pulmonary specialist familiar with neuromuscular disorders as soon as symptoms of muscle weakness are detected.
But this is a muscle disorder, right? What’s breathing got to do with it?
A new web series, hosted by affected teens and featuring some of the world’s top experts in neuromuscular pulmonary care, was created to answer this question and more. You can watch the 30-second trailer here.
KSSK CMD Chats aims to demystify pulmonary care best practices for those impacted by neuromuscular disorders. Hosts Sophie Kim, age 14, who is also featured in the Netflix series The Healing Powers of Dude, and Kierra Sunris, age 15, a theater kid, improviser, RPGer, and video game aficionado, will ask some of our community's top experts about the most important aspects of pulmonary care. Get the critical info you need in just eight webisodes, each less than 20 minutes.
“I wanted to host KSSK because I understand how important it is to learn about how to take care of yourself, especially your pulmonary care,” says Kierra, who in this upcoming winter break from school will be playing Dungeons & Dragons with her friends, and working with her school’s improv team. “Plus, I just love the camera, and I love Sophie… I want people to know that pulmonary care is imperative no matter what age you are. There is nothing to be afraid of, and it is actually super special!”
Sophie, who will spend her winter break relaxing and watching Christmas movies, agrees. “I wanted to host KSSK so I could help others like me have the resources to stay on top of their health. My favorite part of hosting was the team I got to work with, everyone is wonderful and fun to talk with. I want people to learn the importance of pulmonary care and that it's never too late to start.”
Esteemed guests of the web series include:
MyMy Buu MD, Pediatric Pulmonologist and Associate Fellowship Program Director, Lucile Packard Children’s Hospital
Reghan Foley MD, Senior Research Physician, Pediatric Neuromuscular Clinician at the National Institutes of Health
Robert Graham MD, Senior Associate, Critical Care Medicine, Boston Children’s Hospital
Oren Kupfer MD, Pediatric Pulmonologist and Inpatient Medical Director, Children’s Hospital Colorado
Oscar H. Mayer MD, Attending Pulmonologist and Director of the Pulmonary Function Laboratory, Children’s Hospital of Philadelphia
John E. Pascoe MD, Pediatric Pulmonologist and Director of the Pediatric Pulmonary Fellowship Training Program, Cincinnati Children's Hospital Medical Center
Giovanni Perez MD, Pediatric Pulmonologist, Oishei Children's Hospital
Hemant Sawnani MD, Pediatric Pulmonologist, Cincinnati Children’s Hospital Medical Center
Cure CMD is dedicated to supporting those affected by congenital muscular dystrophy, but hopes that the material covered in this web series will be useful to the broader neuromuscular community as well. Executive Director Rachel Alvarez says, “As a consequence of inadequate pulmonary care, I almost died. I need our community to truly understand how important this topic is, and to begin advocating early and often, so that what I experienced doesn’t happen to anyone else. We have an amazing network of passionate clinicians who also want to ensure that everyone has access to this information -- to make avoidable respiratory complications a thing of the past. I can’t wait to share this amazing series!”
KSSK CMD Chats: A Pulmonary Guide Web Series was made possible in part by grants from the Chan Zuckerberg Initiative DAF, an advised fund of Silicon Valley Community Foundation; and from the National Organization for Rare Disorders. The web series is a co-production with Fine Point Consulting.
Visit Eventbrite to claim your free ticket, and join us on Sunday December 27, 2020, at 10am Pacific (Los Angeles) / 1pm Eastern (New York) / 6pm GMT (London). This one-hour event will include a premiere of episodes 1 & 2, and will be followed by a live Q&A with our team of neuromuscular pulmonary experts. Join us for the opportunity to learn and ask questions!