Overview

The 2024 CMTA Patient & Research Summit will take place on Friday, September 6th – Sunday, September 8th at the Denver Marriott West in Denver, Colorado. The CMTA Summit will offer 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. Spend the weekend learning how to manage CMT and how you can partner with CMTA in accelerating research by participating in clinical trials and studies.
The Summit will have exciting social activities, including a youth outing, a social event for COMPASS – our young adults program, an ice cream social, bracing consultations with a certified orthotist, evening social gatherings, and so much more!

Weekend at a Glance

Meet our 2024 Keynote Speaker

Vittorio Ricci

Introducing the 2024 Keynote Speaker, Vittorio Ricci. Vittorio is 26 years old and living in Boston. He was diagnosed with the newly discovered CMT-SORD gene in 2021 after not knowing for years what type of CMT he had. He was originally diagnosed when he was 14. Since his diagnosis, his family has been involved in awareness & fundraising activities with the CMTA. Vittorio’s mom, Jill Ricci, has been the facilitator of the Boston CMTA Branch for over a decade.
Vittorio is currently enrolled in a Phase III clinical trial for govorestat, a proposed therapeutic treatment made by Applied Therapeutics for those with CMT-SORD. He has been working closely with Applied Therapeutics on FDA outreach and advocacy with the hopes of helping to achieve accelerated approval for govorestat which will be the first drug treatment approved for CMT.

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.  

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.  

Steering Committee Members

Robin Cohen
Bruce Egnew
Doak Geiger
Barry Hett
Amy Heyman
Ann Juenger
Pam Laughlin
Ed Nathan
Leslie Koved
Karen Markel
Tim Nightingale
Ron Plageman
Doreen Pomykala
Karen Smith
Ted Spring
Jeannie Zibrida

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