Overview
The 2024 CMTA Patient & Research Summit took place on Friday, September 6th – Sunday, September 8th at the Denver Marriott West in Denver, Colorado. The CMTA Summit offered life-improving presentations on living well with CMT and will provide a comprehensive update on CMTA’s Strategy to Accelerate Research (STAR) programs and initiatives, presented by top CMT researchers.
If you missed the Summit, you can still purchase the Summit recordings.
Weekend at a Glance
Meet our 2024 Keynote Speaker
Vittorio Ricci
What People Have to Say
Some kind words about our Summit
“Enriching!”
“Attending the 2023 CMTA Patient Summit in Boston was a truly enriching experience for me, offering me my first opportunity to meet others affected by Charcot-Marie-Tooth disease. The Summit not only deepened my understanding of CMT through the informative sessions but also gave me the opportunity to make friends! It was an incredible event that provided both knowledge and community.”
-Joshua Fletcher
“Freeing!”
“There’s no better experience than being in a room filled with others who have CMT! It’s freeing knowing that the person next to you isn’t going to bat an eye if you wobble side to side from lack of balance. If you’re able to make it to the CMTA Summit in person it’s 1000% worth the trip!”
-Julie Stone
“Awesome!”
“What an awesome Summit! I’m glad it was offered virtually so that I could attend. I came away from it filled with hope, information, and practical advice for living with CMT. I’m so glad to be a part of this wonderful community!”
-Doreen Pomykala
“Amazing!”
“I can’t say enough good things about the CMT patient summit. It was incredibly valuable to me for gaining updated knowledge on all things CMT as well as making real connections with experts and others with the disease. I would encourage anyone who has CMT or a loved one with CMT to attend this amazing event!”
-Ann Juenger
2024 CMT Patient & Research Summit Agenda
We welcome attendees to check in at the registration table to pick up their badge and take a tour of the Summit space.
We welcome you to select one of our Dinner Dine Around locations and enjoy a lovely meal with fellow CMTers. This event is not included in your registration fee.
We welcome attendees to check in at the registration table during this time and then join us in the conference room for a full plated breakfast, coffee, and refreshments.
Chief Executive Officer, Sue Bruhn, PhD, will give the opening address which will include highlights from the CMTA, Summit flow of the day, and much more.
During this session you will have the opportunity to meet the adult and pediatric CMTA Center of Excellence teams from the University of Colorado and Colorado Children’s. This panel discussion will be led by CMT Clinic directors, Vera Fridman, MD and Michele Yang, MD. This will be an interactive, open Q and A panel discussion.
Jonah Berger will take youth living with CMT out for a day full of fun and connection. Registration is required for this event.
This session will focus on the most important activities people living with CMT can do daily to help manage CMT. You will hear best practices from physical therapists and occupational therapists who work in the CMT Clinics at the centers of excellence at UC and Colorado Children’s.
Take a moment to enjoy organized stretching, have a snack, explore the vendor tables, and mingle with other attendees.
In this session, hear from world renowned foot and ankle orthopedic surgeon, Glenn Pfeffer, MD, on surgical options and outcomes for CMT foot reconstruction surgery. Dr. Pfeffer will discuss who “should” and who “should not” seek CMT surgical interventions.
During this session, pulmonary specialist Ashraf Elsayegh, MD will be sharing information on CMT-induced neuromuscular respiratory muscle weakness. He will discuss what causes this type of respiratory impairment and will offer helpful solutions for navigating and improving symptoms.
Enjoy a box lunch while chatting with CMT experts and community members. After lunch, please spend time exploring the vendor tables. Organized stretching will be offered in the ballroom10 minutes before the break ends.
Saturday, September 7th - 1:25 – 2:10 pm - Bracing/AFO Panel Discussion - Speaker Chair: Ken Cornell
This panel discussion on bracing and AFO’s for CMT patients will be led by orthotist, Ken Cornell. Ken will be joined by the orthotists who serve the patients in the CMT Clinics at UC and Colorado Children’s. They will share information on cutting-edge bracing options for drop-foot and balance issues.
CMT community member and graduate student, Payton Rule, will be sharing findings from a study on CMT Emotional Wellness. She will also offer guidance on finding help for mental health challenges you may be experiencing as a result of navigating a progressive condition.
How Each Individual Can Contribute to Change. Join us for an inspiring presentation by Jeana as she explores the power of individual actions in supporting the CMTA’s mission. Together, even the smallest efforts can create lasting change for those living with CMT.
Visit with Ken Cornell and learn more about how braces can improve your daily living.
Enjoy a scoop of ice cream with fellow CMTers, researchers, doctors and CMTA staff.
Join us for dinner and connect with CMTA Summit attendees, researchers, doctors and CMTA staff (Separate registration required).
Please join us for a full plated breakfast, coffee, and refreshments. The keynote address will be given during this time.
The STAR welcome address will provide a high-level overview of the wide portfolio of CMTA-supported research and how it benefits all types of CMT.
Demyelinating CMT’s (Type 1’s and 4’s) will stay in the main ballroom. Axonal CMT’s (Type 2’s) will move to the Beaver Creek Ballroom. Unknown/VUS CMT’s will move to the Vail Ballroom.
The breakout sessions will summarize current research happening in each CMT type. There will be an opportunity for questions. The session chairs are subject to change.
The breakout sessions will summarize current research happening in each CMT type. There will be an opportunity for questions. The session chairs are subject to change.
The breakout sessions will summarize current research happening in each CMT type. There will be an opportunity for questions. The session chairs are subject to change.
Take a moment to enjoy a snack, mingle with other attendees, and visit the exhibit tables.
In this session you will hear the story of CMT-SORD, from discovery to clinical trial, and the critical role played by the CMTA and our partners GENESIS, the INC and Applied Therapeutics to accelerate the development of this new treatment. We’ll highlight learnings that can be applied to all types of CMT.
In this session you will learn how different genetic therapy approaches can be used to treat CMT and hear about some of our current projects.
In this session, learn how you can be a patient partner in research and participate in the critical work of furthering the development of treatments.
Answers to some of our most commonly asked questions.
Registering for the 2024 CMTA Patient & Research Summit
When is the 2024 CMTA Patient & Research Summit? Is it virtual or in person?
The 2024 CMTA Patient & Research Summit will take place on September 6th – September 8th at the Denver Marriott West in Denver, Colorado with the option to engage from afar using our virtual platform. The CMT Summit will offer in-depth presentations on managing CMT and provide CMT research updates from world-class CMT experts, scientists, biotech partners, and STAR advisory board members. We hope you will join us for our interactive sessions that are patient-centered and community driven.
Where is the 2024 CMTA Patient & Research being held?
Denver Marriott West, 1717 Denver West Marriott Blvd, Golden, CO 80401. A link to secure your room at the Denver Marriott West will be provided via email after you register for the Summit.
What transportation options are available to take one from the airport to the CMTA Patient & Research Summit hotel?
- Denver airport transportation options:
- Ride Shares – price varies depending on arrival time and availability
- Uber
- Lyft
- Taxi
- Give-A-Lift
- Fully Accessible
- https://www.givealiftllc.com/
- Price: Round trip is $306 and can fit up to 3 additional passengers. If multiple families book with this company, they will provide a discount.
- Golden West Airport Shuttle
- https://goldenwestairportshuttle.com/reservations/
- Price:
- Van holding 10 guests is $258.00
- Ride to DIA
- https://ridetodia.com/
- Price:
- Car holding 2-3 guests is $95
- SUV holding 1-5 guests is $115
- Colorado Transfer
- https://carservicecolorado.com/
- Price:
- SUV holding 1-6 guests is $135
- Van holding 1-14 guests is $200
- Mobility Transportations and Services
- Fully Accessible
- https://www.mobilitytransportationdenver.com/services
- Price: $320 for one-way ride
- Ride Shares – price varies depending on arrival time and availability
During the 2024 CMTA Patient & Research Summit
What are the hours of the conference?
The 2024 Patient and Research Summit will be a two-day Summit filled with in-depth presentations on managing CMT, research updates and social opportunities.
Will there be an exhibit hall?
We will have an exhibition hall where you can learn about pharmaceutical advancements, assistive technology and more through one-on-one appointments, product demos, and online resources.
What’s included in the registration?
- A full weekend of interactive sessions featuring patient centered care tips and strategies and CMT-STAR research updates.
- A participatory online experience where you can connect with fellow CMTers, clinicians, researchers, and pharmaceutical partners.
- A flexible schedule with all educational sessions available on-demand post-summit so that you can continue to learn and share resources after the summit concludes.
- A safe space for connection and joy (we know you will be joining us from home so we will have opportunities throughout the summit to stretch, dance and meet others!)
After the Summit
The CMTA will share session recordings after the summit.
How can I get help if my question isn’t answered on this page?
Please feel free to get in touch! You can email us or call us at 800.606.2682.
Steering Committee Members
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