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United Mitochondrial Disease Foundation

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United Mitochondrial Disease Foundation

The United Mitochondrial Disease Foundation provides research and support for the mito community. On a larger scale, organ systems begin to fail.

ABOUT MITOCHONDRIAL DISEASE
Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10, although the actual number of children born with the disease is thought to be much higher. In fact, recent research indicates that one in 200 people harbor a genetic mutation that can lead to mitochondrial disease in them or their offspring. Most patients suffer symptoms for years before they are accurately diagnosed with a mitochondrial disease. Mitochondrial diseases result from the failure of the mitochondria, which is located in the cells of our bodies. Mitochondria are responsible for creating more than 90% of the energy needed to sustain life and support growth. When mitochondria fail, less energy is produced causing cell injury or cell death. The disease is often debilitating. In some cases, it may result in death. Adult onset is becoming more and more common. There is no cure for mitochondrial disease.

10/12/2026

Today is . Pyruvate dehydrogenase complex deficiency (PDCD) is a rare genetic mitochondrial disorder that affects the body’s ability to convert food into energy.

For individuals and families living with PDCD, every day can bring unique challenges. Today, we’re raising awareness, amplifying their stories, and working toward a future with better treatments and more support.

Learn more: https://umdf.org/pdcd/

10/11/2026

Missed this year’s 2026 family programming in Orlando, Florida? You can now catch up on the recorded sessions! Explore topics like Approved Therapies Coverage Landscape: What We’re Learning, and Living with Leigh Syndrome: Care, Science, and Support Together, plus more videos coming soon.

Watch the sessions here: bit.ly/4jLqftt

10/10/2026

Do you have questions about access to therapies and treatments for ? Join us for our next Ask the Mito Doc webinar on October 27 at 7 PM ET as we explore Understanding Access to Therapies: Compassionate Use, Expanded Access, and Off-Label Treatment in Mitochondrial Disease.

Register today and bring your questions! bit.ly/4ywhrvz

10/09/2026

A community that understands your journey starts here. Connect with patients and families through weekly Virtual Support Meetings hosted by UMDF to share experiences and find encouragement in the community. Check our events calendar for login details and join us. https://umdf.org/events-calendar/

10/08/2026

October is . Vision issues can be an important part of the mitochondrial disease experience. In our mitoSHARE community, 54% of participants have reported a major vision issue, an optic nerve abnormality, or a retinal abnormality.

Mitochondrial disease can affect vision in different ways, making awareness and understanding especially important.

Does your cause vision issues? Share your experience in the comments.

10/07/2026

Stay informed on the latest updates surrounding the PRIZM Study!

UMDF, alongside our partners at Mitoaction, International Mito Patients, The Lily Foundation, MitoCanada, Mito Foundation, and Mitocon - Insieme per lo Studio e la Cura delle Malattie Mitocondriali ODV, are hosting a community update regarding the PRIZM study (Phase 2b Randomized, Placebo-Controlled Trial Investigating Zagociguat in MELAS) on Thursday, October 8 at 7 PM ET.

Presenters will share key updates on the status of the study, followed by a dedicated community Q&A.

Can’t attend live? A recording will be made available to the community following the event. Register for the webinar here: https://bit.ly/4yjrgwM

10/06/2026

Do you want to host an in-person support meeting? We recently gathered at Columbia Doctors in Midtown Manhattan, bringing members of the community together to connect and share their experiences face-to-face. Thank you to Dr. Michio Hirano and UMDF Support Ambassador Monica Chulewicz for helping organize the event and facilitate discussion among attendees.

If you’re interested in hosting an in-person meeting, email Margaret Moore at [email protected].

10/05/2026

The latest issue of UMDF Connect is here! Check your inbox for a recap of , new support meetings launching, exciting updates coming to mitoSHARE, and more from across the UMDF community.

To read the newsletter: https://umdf.org/oct26_newsletter/

To sign up for the newsletter: https://umdf.org/newsletter-signup/

10/04/2026

POLG families, here’s your opportunity to help researchers understand POLG-related .

We are excited to announce that UTHealth Houston has been activated as the first clinical site for the POLG Natural History Study and is now accepting participants

To be considered for participation in the POLG Natural History Study, individuals must be enrolled in mitoSHARE, be 0 – 75 years of age and have genetically confirmed diagnosis of a POLG disease.

Questions or interested? Email [email protected].

10/03/2026

Fall is here, and so are UMDF’s Energy for Life Walks! Join us in supporting the community at our upcoming walks in Chicago on October 10 and Charlotte on October 24.

Whether you walk, donate, sponsor or cheer us on from the sidelines, your support helps power the mito community forward.

Register, donate, sponsor or learn more about an upcoming UMDF Energy for Life Walk! https://www.energyforlifewalk.org/

Address

8085 Saltsburg Road, Suite 201
Pittsburgh, PA
15239

Opening Hours

Monday	8am - 5pm
Tuesday	8am - 5pm
Wednesday	8am - 5pm
Thursday	8am - 5pm
Friday	8am - 5pm

Telephone

+14125734090

Website

http://www.umdf.org/

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