March 2026 Newsletter: Mito Med Conference, Volunteer Awards, Advocacy

Signup to receive the UMDF newsletter in your email monthly at umdf.org/newsletter-signup.

Meet Us At MitoMed 2026 in Orlando, FL

Registration for the Mitochondrial Medicine 2026 conference in Orlando, FL from June 17-20 is now open! This year, we’ll be at the beautiful Renaissance Orlando at SeaWorld where mitochondrial disease families, clinicians, researchers, and industry partners will have the opportunity to learn and grow together.

Whether you’re looking to connect with other families, participate in research, learn from leading clinicians in the field, or are seeking more information about the latest in mitochondrial disease research and awareness efforts, MitoMed offers something for everyone.

Visit umdfconference.org to view the program, book your room, and register. We look forward to seeing you there and kicking off the start of summer with you at this annual event. Scholarships are open for families, clinicians, and young researchers. Applications are due April 15. 

Nominate an Inspiring Volunteer

Do you know someone who’s making a difference as a UMDF volunteer? Nominate them for a UMDF Volunteer Award and help recognize them for their hard work and dedication to supporting people living with mitochondrial disease. Click here for the nomination criteria and to nominate a deserving volunteer for the Energy Award, Heartstrings Award, or Leap Award by April 15.

UMDF Goes to Washington, DC

As part of Rare Disease Week, our team was in Washington, DC to meet with congressional leaders and take part in a Mitochondrial Disease Caucus Briefing alongside leaders from the Hope for PDCD Foundation. Take a peek at our social media pages for a behind-the-scenes look at our time advocating for the mitochondrial disease community. Amongst the priorities discussed were rare disease drug development, appropriations for the Peer-Reviewed Medical Research Program, the Medical Nutrition and Foods Act, and the Genomic Answers for Children’s Health Act.

Learn More About Clinical Trials from the Experts

Interested in learning more about clinical trials? The next UMDF combined Ask the Mito Doc and Bench-to-Bedside Webcast on March 9 at 12 PM EST is a good place to start. Moderated by Amel Karaa, MD, the discussion features speakers Zarazuela Zolkipli Cunningham, MD, Children’s Hospital of Philadelphia; Carlo Tacconi, CEO, mHealth Technologies, Bolgna, Italy; Sabato Mellone, PhD, University of Bologna, Italy; Damiano Zanotto, PhD, Stevens Institute of Technology; Tony Adams, MD, Gentle Jogger; and Nicole Wilson, UMDF Program Manager. Click here to register.

You can catch up with last month’s Bench-to-Bedside Webcast on Emerging Trends, AI Tools & Translational Progress with Michelangelo Mancuso, MD, PhD, from the Neurological Institute, University of Pisa & AOUP, in Italy, here.

Save the Date for a Special Ask the Mito Doc Webcast

We’re pleased to host a special Ask the Mito Doc webcast on March 20 at 12 PM EST with Sarah Chang, PhD, Medical Strategy Lead, UCB who will provide Updates on the New TK2d Therapy, Kygevvi.

Click here to submit your questions in advance and click here to register.

More No-Cost Genetic Testing Now Available

Breaking news! UMDF has just added more capacity for our Patient-Enabled No Cost Genetic Testing program. The program is once again in partnership with Probably Genetic, which utilizes an online symptom assessment to determine testing eligibility. The test is based on a whole genome backbone and will return results for all known pathogenic nuclear genes associated with mitochondrial disease as well as full mitochondrial DNA sequencing. Click here to see if you qualify .

Get Ready to Walk for UMDF and Mitochondrial Disease Awareness

UMDF’s Energy for Life Walks are coming to cities across America. Our 2026 walks are almost underway, and we’re excited to see you all walking to raise awareness and funding for mitochondrial disease research. Keep an eye out for updates on which cities we’ll be walking in in 2026 and how you can get involved. Don’t see a walk taking place near you? Contact us to learn more or create a DIY event. For more information about our walks, joining a committee, or getting involved, contact events@umdf.org.

Join the mitoSHARE POLG Natural History Study

UMDF is seeking participants for the “mitoSHARE POLG Natural History Study.” The purpose of this study is to better understand the natural history of the POLG disease spectrum. You or your family member may be able to join the study if you have a confirmed POLG related diagnosis caused by a known pathogenic gene mutation or deletion and you register/are registered in mitoSHARE. Other criteria will include completing questionnaires every 3 to 6 months about daily functioning, symptoms, and quality of life, and complete assessments performed by a clinician during in-clinic or remote visits. There will be an option to participate in this study online through mitoSHARE or in person at 6 different hospitals across the country. If you are already a mitoSHARE participant, simply email Danielle Black at registry@umdf.org to learn more. If not, register now at umdf.org/mitoSHARE.

Join UMDF’s Team Activate in the 2026 Bank of America Chicago Marathon

Love running? We invite you to join UMDF’s Team Activate at the Bank of America Chicago Marathon in 2026. Start the process by completing our prescreening form asap. If you are selected as a part of Team Activate, you are provided guaranteed entry to the Bank of America Chicago Marathon on October 11, 2026, with no lottery or other qualifying requirements to run. In return for the guaranteed entry, runners are required to raise $2,200 in support of UMDF’s mission. Runners are also responsible for their registration fee and associated travel costs. If you have any questions before submitting your form, contact kelsi.martinez@umdf.org.

Become a singlet sponsor!
Feature your company logo on the back of Team Activate’s singlets at the 2026 Bank of America Chicago Marathon to support the UMDF mission. Learn more by contacting tara.gallessich@umdf.org.

MitoWorld’s #BeyondTheDisease

Each month, UMDF partners with MitoWorld for #BeyondTheDisease, a feature highlighting advances in mitochondrial science and the people responsible for them. This month, catch a recap from the Keystone Symposia conference Mitochondria Signaling in Physiology and Disease, and read about the latest mitochondrial disease research published in Molecular Cell, Cell Reports, and Cell Metabolism.

Read more here.

	Shape Advocacy Efforts in Family Planning You can help shape advocacy efforts and the role that organizations like UMDF play in the family planning space by participating in the Family Planning Survey. In collaboration with the Cure Mito Foundation and LHON Collective, your voice and perspective shape our family planning-related services and advocacy work. Click here to take the survey.
	Join UMDF During Brain Awareness Week Did you know that Brain Awareness Week is March 16-22? We’ll be sharing content throughout the week highlighting the connection between the brain and mitochondrial disease. Check out our social media channels for important stats and share our content throughout the week to help raise awareness. Creating your own content during the week? Tag us @UMDF so we can share it.
	Support is Only a Click Away Navigating a mitochondrial diagnosis can be challenging and isolating. But you don’t have to do it alone. UMDF hosts weekly Virtual Support meetings that you can join from anywhere and get the support you need from the comfort of your own home. Whether you’re looking to connect with other patients and families or learn more about your specific condition, check our events calendar for login details and join us.
	Watch the PPA2 Virtual Conference Replay Last month, UMDF hosted a PPA2 Virtual Conference: Connecting Clinical Care and Scientific Discovery Webcast moderated by Amy Goldstein, MD, Children’s Hospital of Philadelphia, and Hilary Vernon, MD, Johns Hopkins University School of Medicine. If you missed the discussion, you can catch the replay here on our new PPA2 page.
	Visit UMDF at the MDA Conference Heading to the Muscular Dystrophy Association’s 2026 (MDA) Clinical & Scientific Conference from March 8–11 in Orlando, Florida? Stop by Booth #14 in the Exhibit Hall’s Patient Advocacy Pavilion and say hello to UMDF staff who will be in attendance with information about mitochondrial disease, ways to get involved with the mito community, and upcoming events that you can be a part of. Click here for more information.
	Calling All Researchers There’s still time to submit an abstract for this year’s Mitochondrial Medicine Conference. Abstracts are due by March 31 and should succinctly explain the goal of your research for conference attendees. A limited number of abstracts will be selected for oral presentations during select platforms, and all approved submissions will have the opportunity to share their projects during the dedicated poster sessions. Click here to submit your abstract.