Mitochondrial Medicine Symposium
About Mitochondrial Medicine Symposium
Each year, UMDF’s Mitochondrial Medicine Symposium brings together the best minds in mitochondrial medicine and the patients we serve. With over 700 attendees representing almost every state in the U.S. and more than 15 different countries, the Symposium is recognized as the world’s preeminent event for mitochondrial disease.
About Mitochondrial Medicine Symposium
Each year, UMDF’s Mitochondrial Medicine Symposium brings together the best minds in mitochondrial medicine and the patients we serve. With over 700 attendees representing almost every state in the U.S. and more than 15 different countries, the Symposium is recognized as the world’s preeminent event for mitochondrial disease.
Mitochondrial Medicine 2023 • Charlotte, NC
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2023 Registration is NOW OPEN
Clinical & Scientific Program
Family Program
Sheraton Charlotte Hotel/Le Méridien
555 S McDowell St
Charlotte, NC 28204
- Pre-Arrival Hotel Info – Pre-Arrival Hotel Info Link >> (Note: UMDF has a parking discounted rate)
- Charlotte Airport – Ground Transportation Link >>
- Taxi vs. Uber/Lyft Prices – about the same. For Uber/Lyft – depends on your arrival time as rates vary. Note – Uber app will let you schedule ahead of time if you want to be better prepared.
Parking at Hotel for Meeting:
- As part of our meeting contract, we are able to offer $15 overnight and $10 daily
- Your guest room key is integrated with the parking lot/deck. Use your room key for in and out privileges.
- For those guests not staying at the Sheraton, see the UMDF Registration Desk for a validation sticker to receive the discounted rate.
Symposium provides an international stage for leaders in the field of mitochondria and offers programs to inspire the next generation of researchers. You will learn about the latest developments in the field of mitochondrial medicine, including industry advancements, potential treatments, therapies and cutting edge research. The event also gives the scientific communities the unique experience of engaging with affected patients to better understand symptoms and work faster towards a cure.
Click the button below to check out the invited speakers and program highlights for June 28 – July 1 in Charlotte, NC!
Douglas C. Wallace, PhD, Director of the Center for Mitochondrial and Epigenomic Medicine at Children’s Hospital of Philadelphia, delivers the 2019 Mitochondrial Medicine Symposium Opening Address.
As part of UMDF’s commitment to furthering research, we’re excited to announce this year’s Symposium – June 28 thru July 1 in Charlotte, NC – will offer attendees the ability to take part in clinical research on-site at the new Clinical Research Pavilion, where they can participate in an array of studies, including:
- Motor Skills Assessment of mitochondrial disease patients, conducted by researchers at Children’s Hospital of Philadelphia.
About the study: To develop and validate minimally invasive or noninvasive diagnostic techniques to quantify mitochondrial function in living people. Assessments will include muscle strength testing, muscle fatigue testing, balance testing, and exercise intolerance testing (sit to stand test and a 6-minute walk test) while wearing an activity monitoring device.
Requirements: ambulatory, genetically confirmed mitochondrial disease patients age 16+
- Video Assessment for Primary Mitochondrial Myopathy (PMM) and PolG patients, conducted by research firm Casimir.
About this study: “Development of the Mitochondrial Video Assessment (MVA) as an Outcome Measure for the Evaluation of Patients with Mitochondrial Myopathies.” This study hopes to develop sensitive, reliable outcome measures that will provide decisive information on treatment efficacy using outcome variables that are most important and impactful to PolG and PMM patients. The study will employ remote video capture to assess subtle shifts in movement patterns to measure change in function over time, allowing patients to participate in clinical trials without the added stressors of traveling to a clinic site. Patients will be asked to record themselves doing disease-specialized tasks that measures things like ataxia and gait, which will then be professionally graded by a physical therapist, showing progress or regression during the study.
Requirements: Genetically confirmed PMM or POLG patients age 16+
- Study of Viral exposures in children with mitochondrial disease for affected pediatric patients, conducted by Peter McGuire, MD.
About the study: Children with mitochondrial disease can develop clinical decline with viral infections. However, this does not happen with every viral infection. To better understand host-pathogen interactions in children with mitochondrial disease we will perform pan-serologic profiling of the viral exposome using an at home collection tool.
Requirements: genetically confirmed mitochondrial disease patients age 16+
How to sign up for the Clinical Research Pavilion:
- Submit your interest form for the Clinical Research Pavilion here. A UMDF representative will be in touch with additional details.
- To ensure the Clinical Research Pavilion reflects the full patient perspective, participation will require enrollment mitoSHARE, UMDF’s patient registry. If you’re not a participant already, please consider registering for mitoSHARE now to enjoy all the benefits, as well as save time later.
- Once you are enrolled in mitoSHARE, you’ll want to take the Clinical Research Pavilion Survey on the mitoSHARE platform. This will direct you to the links to sign up for your time slot. You will then be contacted by one of the research studies on any further steps you may need to take.
Symposium gives patients and families the opportunity to meet some of the top clinical mitochondrial specialists from around the world. There is a mix of education-based sessions, “Ask the Mito Doc” panel discussions, and social events to meet and connect with others who share your journey. You will discover an entire community of helpful resources and support services during the Symposium’s two-day family program.
“I am still always amazed by the true desire of the clinicians to speak and learn from us. You can tell your individual story. I LOVE connecting with people from the top to the bottom.”
“I enjoyed every aspect of the conference. The free time to interact with other attendees was just as beneficial as the seminars. There was so much to choose from and it was very well organized.”
A special thanks to this year’s sponsors:
The Edith L. Trees Charitable Trust
