World Mito Week 2026 Recap

Thank you to everyone who participated in World Mito Week 2026! Whether you shared your story, reposted UMDF’s social media content, or used your voice to advocate for the mitochondrial disease community, you played an important role in #PuttingMitoOnTheMap.

Throughout the week, we shared Aneesa’s and Chelsea’s stories from the TK2d community, highlighted Andria’s MELAS journey, spoke with Morgan Voigt, Executive Director, Cure LBSL, for LBSL Awareness Day, shared important mito facts, spotlighted buildings and landmarks that participated in Light Up for Mito, and showed how UMDF staff got moving as part of our Virtual Mito Movement Challenge throughout September.

We’re grateful to our mito partners and International Mito Patients for creating this year’s theme and for working together to amplify our collective voices and spread awareness of mitochondrial disease around the world.

Visit our Facebook, LinkedIn, Instagram, and X pages to view our World Mito Week posts.

 

POLG Families: Take a Patient & Caregiver Survey to support the November EL-PFDD Meeting

Calling all POLG patients and caregivers! Your voice can help advance POLG therapies.

UMDF, MitoAction, the POLG Foundation, and International Mito Patients (IMP) are collaborating on a national survey exploring the journey and daily challenges faced by people living with POLG and their caregivers.

Whether you are a patient or caregiver, your real-world insights can help bring greater awareness to the needs and experiences of the POLG community. Survey responses will help inform the upcoming Externally Led Patient-Focused Drug Development (EL-PFDD) meeting for POLG on November 17.

PFDD meetings help bring patients lived experiences, perspectives, needs, and priorities into conversations about the development and evaluation of medical treatments.

The November 17, 2026, EL-PFDD meeting is open to the entire mitochondrial disease community, including patients, caregivers, clinicians, researchers, and industry partners.

Take the POLG survey and register for the EL-PFDD meeting.

Celebrating Our UMDF Team

We’re excited to celebrate three well-deserved promotions within the UMDF team! Please join us in congratulating Kara Strittmatter on her new role as Vice President of Education & Clinical Engagement, Margaret Moore on her promotion to Director of Patient Support & Community Programs, and Tara Gallessich on her promotion to Associate Director of Development.

Kara, Margaret, and Tara each bring so much dedication, passion, and heart to their work, and we’re incredibly grateful for all they do for the mitochondrial disease community.

Please join us in celebrating these exciting milestones and wishing them continued success in their new roles!

Learn more about our staff here.

New Mito Support Groups Launching

We’re excited to announce UMDF will be launching new support groups this fall!

If you are a patient or caregiver in the mito community, our virtual support meetings are a great way to connect with others, share your experiences, and engage with the community.

• Saturday, October 3: If you’re local to the Minnesota area, join UMDF for an in-person support meeting at the Golden Valley Library (830 Winnetka Ave N, Minneapolis, MN 55427). From 10:30 am – 12:30 pm CT, attendees are invited to come together, support one another, and build meaningful connections. If you are interested in attending or have questions, please email Margaret Moore at moore@umdf.org.
• Wednesday, October 21 at 12 PM ET:Getting a treatment prescribed is one step. Getting it covered, filled, and delivered can be a whole separate process. As new therapies become available for people living with mitochondrial disease, more families are navigating prior authorizations, denials, appeals, and specialty pharmacies for the first time. You don’t have to navigate it alone. Join UMDF for a Rare Disease Drug Access Support Group for patients, parents, and caregivers working to access medications and treatments for mitochondrial disease. Click here to register.
• Tuesday, October 27 at 11 AM ET:Grab a cup of coffee or tea and join us for the Virtual Breakfast Club Support Meeting. Start your day by connecting with inspiring members of the mito community.

To learn more about UMDF’s weekly Virtual Support Meetings and find the one that’s right for you, visit the UMDF Events Calendar.

NYC Mito Meet-Up

We recently hosted an in-person support meeting at Columbia Doctors in Midtown Manhattan, bringing members of the mito 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. The meeting also welcomed newly diagnosed individuals with KSS, who had the opportunity to connect with others in the KSS community.

Thank you to everyone who joined us! Stay tuned for future in-person gatherings.

New Languages Coming to mitoSHARE

We’re pleased to announce, beginning later this month, UMDF will launch new translation features on the mitoSHARE platform. This exciting update will allow you to experience mitoSHARE in French, Spanish, and Portuguese, and you’ll be able to change your language preference at any time.

For patients and caregivers, this means greater flexibility and easier access to the information, surveys, and opportunities available through mitoSHARE — without language having to be a barrier to participation.

Whether you’re already an active member or are just getting started, we want mitoSHARE to be a place where everyone in the mitochondrial disease community feels welcome, included, and empowered to participate.

Stay tuned as we roll out this new feature and continue working to make mitoSHARE a more accessible and connected community for everyone!

Upcoming Ask the Mito Doc and Bench-to-Bedside Webinar and Replays

Missed last month’s webinars? You can catch up — or rewatch — our latest Ask the Mito Doc and Bench-to-Bedside sessions.

Click here to watch the Ask the Mito Doc on POLG: Building Knowledge, Advancing Research, and Inspiring Hope, and click here to watch the Bench-to-Bedside on Creatine and the Brain: Mitochondrial Mechanisms and Therapeutic Opportunities in Neurological Disorders.

Looking ahead, join us for:

• Bench-to-Bedside:Mitochondrial Cardiomyopathy: A Contemporary Approach to Clinical Evaluation and Management on Monday, October 5 at 12 PM ET. Click here to register.
• Ask the Mito Doc:Understanding Access to Therapies: Compassionate Use, Expanded Access, and Off-Label Treatment in Mitochondrial Disease on Tuesday, October 27 at 7 PM ET. Click here to register and click here to submit your questions

Fall is Here, and So Are UMDF’s Energy for Life Walks

Fall is here, and that means it’s time to lace up and show up for the mito community! UMDF’s Energy for Life Walks are bringing our community together this fall, with upcoming events in Chicago on October 10 and Charlotte on October 24.

Whether you’re walking, donating, sponsoring, or cheering from the sidelines, you’re helping power the mito community forward. Every step, every dollar, and every show of support makes a difference.

Ready to get involved? Register, donate, sponsor, or learn more about an upcoming UMDF Energy for Life Walk! Click here to get involved.

Family Programming from Mito Med 2026

Want to catch up on this year’s Mito Med family programming from Orlando, Florida?

Recorded sessions are now available to watch, with topics including Approved Therapies Coverage Landscape: What We’re Learning, Living with Leigh Syndrome: Care, Science, and Support Together, and more.

Click here to explore the Mito Med family programming.

Pre-Order The Donkey and The Cart

Looking for a meaningful read this fall? The Donkey and The Cart by Charles Mohan, UMDF’s Founder and Chairman Emeritus, offers a deeply personal look at one family’s journey with mitochondrial disease.

Chuck shares how his daughter Gina’s diagnosis turned his family’s life upside down, and how that experience inspired him to found UMDF 30 years ago. The book explores love and loss, family and faith, resilience and perseverance, and the extraordinary difference one person can make by refusing to accept that “there is nothing that can be done.”

Fifty percent of proceeds from every purchase benefit UMDF, helping support patients and families in the mitochondrial disease community.

Click here to pre-order your copy of The Donkey and The Cart.

POLG Natural History Study – inside mitoSHARE
This global study will capture prospective natural history data on people with polymerase gamma (POLG) disease of all ages. In addition to informing our understanding of the progression of POLG disease, the study will also describe the various phenotypes and genotypes as well as adverse events occurring throughout the course of the disease.  The study intends to identify clinical endpoints and key outcome measures for future clinical trials in POLG disease.

To be considered for participation in the POLG Natural History Study, individuals must:

• Be enrolled in mitoSHARE
• Be 0 – 75 years of age
• Have genetically confirmed diagnosis of a POLG disease

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 for enrollment. We anticipate activating additional sites in the United States over the coming month, further increasing opportunities for individuals and families affected by POLG disease to participate in this important research.

Questions or interested? Email registry@umdf.org.

Join Us for a Special Mindfulness with Mary Webinar

This November, we’re hosting a special Mindfulness with Mary webinar centered around art and gratitude as we look toward the holiday season.

This interactive virtual event will be open to everyone in the mitochondrial disease community, with an emphasis on creating mindful connection through art. Keep an eye out for more details coming soon!

MitoWorld’s #BeyondTheDisease Each month, UMDF partners with MitoWorld for #BeyondTheDisease, a feature highlighting advances in mitochondrial disease and the people responsible for them. This month, read about the latest conversations and discoveries in mitochondrial science, from the growing interest in integrative mitochondrial medicine and Philadelphia’s emergence as a hub for mitochondrial research to new insights into how mitochondria regulate fat storage and energy use. Researchers are also developing new framework for understanding skeletal muscle health, with the goal of advancing diagnostics and therapeutics. Read more here.