Support UMDF’s Spring Appeal

As we celebrate 30 years of serving the mitochondrial disease community, we’re proud of how far we’ve come, and are focused on the work still ahead.

Our Spring Appeal reflects both. It honors the progress made over the last three decades while fueling what’s next: a future where every patient and family has hope for a world free from the challenges of mitochondrial disease.

This season, we invite you to be part of that progress. Your support helps bring our strategic priorities to life — advancing funding, improving diagnosis and access, strengthening collaboration, and raising awareness across the mito community.

Whether you make a one-time gift or become a recurring donor, your generosity powers critical research, expands support and education programs, and deepens our impact.

Click here to join us in accelerating breakthroughs and moving closer to cures.

All Roads Lead to MitoMed in Orlando, FL

There’s less than six weeks left until Mitochondrial Medicine Conference 2026 officially hits Orlando!  We’re looking forward to seeing patients, families, scientists, clinicians, and industry partners come together to learn and network during our time together from June 17-20. There’s something for everyone at MitoMed, including special disease specific programming for numerous mito communities — including Leigh syndrome, POLG, MELAS, MEPAN, and CPEO/KSS — that offers patients and families the opportunity to engage with each other and the world’s leading names in science and medicine. To register for MitoMed, click here.

*If you haven’t booked your room yet, the hotel has sold out on several nights. We have an additional hotel room block at the Hilton Garden Inn through May 29th. We suggest that you book a refundable room at Hilton Garden Inn and check back for cancellations at the Renaissance through May 24th. 

SciMed Community…Save Your Spot for our Next Bench-to-Bedside Webinar

Wondering what to expect at our upcoming Mitochondrial Medicine Conference 2026 in Orlando, FL or want to hear more about what’s taking place at EuroMit 2026? Get all the details for both conferences at our next Bench-to-Bedside webinar on Monday, May 11 at 12 pm ET. We’ll be joined by conference chairs from MitoMed and EuroMit who will share updates for those interested in attending and offer a preview of what to expect. Click here to register.

Let’s Get Ready for MitoMed 2026

​​​If you’re planning to attend this year’s Mitochondrial Medicine Conference 2026 in Orlando, FL, you don’t want to miss this month’s Ask the Mito Doc Webinar on Thursday, May 28 at 12:30 pm ET. This will not be our typical Ask the Mito Doc, as we will not have any clinician speakers, but this is the place to have all of your questions answered about conference and to hear more about the sessions, networking, and educational opportunities available to you from UMDF staff and volunteers. Click here to submit a question in advance and click here to register.

MitoMed Clinical Research Pavilion Returns; Join mitoSHARE Now to Sign-up

MitoMed’s Clinical Research Pavilion needs you! Step up to help accelerate research and deepen understanding of mitochondrial disease by participating in research live at conference this June. Studies available include:

• MERLIN Clinical Research Study
• POLG Natural History Study
• Children’s Hospital of Philadelphia – pGz modified Jogging Device Study
• Children’s Hospital of Philadelphia – MM-Coast Study 
• mitoSHARE Biorepository 
• NIH MINI Study 
• University of Rochester – Center for Health + Technology – Mitochondrial Disease-Health Index

Get a head start on participating by signing up for mitoSHARE, UMDF’s patient registry, click here to register. Click here to sign up for the Clinical Research Pavilion.

Inside the 2026 UMDF Spring Staff Retreat

Last month, the UMDF team gathered in Pittsburgh for a staff retreat that brought together both new and long-time team members in person. Over a day and a half, staff had the chance to connect across departments and dive deeper into the organization’s new strategic plan, aligning on the priorities guiding our work ahead.

Next Stop: UMDF’s Energy for Life Walk in St. Louis

Who’s ready to walk with us to raise awareness and funding for the mitochondrial disease community in St. Louis? Our first UMDF Energy for Life Walk of the season kicks off on Saturday, May 16 at 9 am CT at Gloria Rodgers Shelter at Tilles Park (9551 Litzsinger Rd, St. Louis, MO), and there’s still time for you to be a part of it. Register today to promote research, education, and support for the mitochondrial community. Not in St. Louis? No problem – click here to see all our upcoming Energy for Life Walks.

Call for Partners to Help Shape the Future of Leigh Syndrome Research

UMDF is proud to be part of the Leigh Syndrome International Consortium alongside four other leading mito patient advocacy organizations. The Leigh Syndrome International Consortium funds research to improve diagnosis, supports treatment development, and strengthens care for people with Leigh Syndrome, and is currently seeking advocacy organizations, foundations, and aligned partners to join the Consortium from 2027–2030. Interested in learning more? Click here.

Power Every Mile as a Singlet Sponsor at the 2026 Bank of America Chicago Marathon 

It takes a committed community to move a mission forward, and this year, Team Activate is doing just that at the 2026 Bank of America Chicago Marathon.

There’s still time to be part of the impact as a sponsor. Just ask Leslie Engle, Vice President and COO at Team Recovery, who proudly stepped up to support UMDF’s Team Activate. For Leslie, the decision is deeply personal — her son is running on behalf of her and the entire mitochondrial disease community, and her sponsorship is a meaningful way to stand behind him while supporting everyone still searching for answers, treatments, and hope for the future. Her support also helps champion the clinicians and researchers working tirelessly to advance care and drive progress for the mito community.

Join Leslie in making a difference. Become a sponsor of Team Activate and help move critical research, care, and support forward for families who need it most.

For more information, contact Tara Gallessich at tara.gallessich@umdf.org. ​​​​​​

University Student Raises Awareness for Mitochondrial Disease

One of UMDF’s dedicated volunteers, Jody Thompson, recently shared her cousin, Ava Houk, a pre-med student at Bowling Green University, was awarded a grant to support a mito research project.

Ava chose to focus her work on mitochondrial disease and presented her project, Beyond the Powerhouse: Understanding Mitochondrial Disease. We’re so grateful to see the next generation of advocates help raise awareness and deepen understanding of this disease.

Congratulations, Ava, and thank you for shining a light on mitochondrial disease within your university community!

Have news to share with us? Let us know by emailing news@umdf.org.

Take Action for the Mitochondrial Disease Community

Use your voice to ask your local members of Congress to co-sponsor the Medical Foods and Formulas Access Act, which would require coverage of “medically necessary food” for individuals who receive health coverage through Medicaid, CHIP, Medicare and FEHBP. This legislation is critical to individuals who rely on medically necessary, specialized foods and formulas as their treatment. Click here to take action.

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, read about an upcoming session on Mitochondrial Transfer Networks in Cancer Progression taking place at the annual meeting for the American Association for Cancer Research (AACR), and new research that’s been published in Cancer Letters, Nature, Cancer Discovery, and Science Advances. Read more here.