|
World Mitochondrial Disease Week is Here
This year, World Mitochondrial Disease Week runs from September 14-20, and there are many ways to get involved and help raise awareness for the mito community. Whether you share your story, repost UMDF content on social media, get a building in your neighborhood lit green, or participate in one of UMDF’s upcoming Energy for Life Walks taking place in September, you can join us in #PuttingMitoOnTheMap. Here are a few ways to get involved: Virtual National Mito Movement Challenge: UMDF is excited to introduce our Virtual National Mito Movement Challenge, taking place throughout the month of September. In honor of our 30th anniversary, we’re challenging supporters to collectively move for 30,000 active minutes while helping us raise $30,000. Every minute you log can help power hope for patients and families living with mitochondrial disease. Getting started is easy: register, sync your activity tracker, set your goal, get moving, and encourage others to join and support you. And the best part? There are so many ways to move! Walk, stretch, dance, do housework, garden, share mito information online, and more. Every activity counts. Download our step-by-step guide to maximizing your activity tracking and get started today! To register, click here. Register for an Upcoming UMDF Energy for Life Walk: Want to join us in person this month and connect with others in the mito community? Register for one of our upcoming Energy for Life Walks taking place in:
Click here to register, donate, or become a corporate sponsor. Join an Upcoming Webinar: UMDF is excited to unite with other mitochondrial disease-focused patient advocacy groups across the globe to raise awareness, promote greater understanding and recognition of mitochondrial disease, and help advance the search for effective treatments and cures. Together, we hope that increased awareness, attention, and funding will help move the needle for the entire mito community. If you’d like to learn more about mitochondrial disease, here are virtual opportunities:
Get Involved: This year’s campaign theme, in collaboration with International Mito Patients for World Mitochondrial Disease Week, is #PuttingMitoOnTheMap. The International Mito Patients page has created an interactive map highlighting where awareness efforts are taking place around the world, as well as a place to upload and share your story with the global mito community. They’ve also created downloadable messages and graphics that you can use and share on your own social media accounts to help spread the word from wherever you are. Click here to participate and help raise awareness. Follow UMDF: Are you following us on Facebook, LinkedIn, Instagram, and X? Make sure to follow @UMDF to stay connected with our content, hear from members of our community throughout the month, and help us reach even more people in the mito space. For a list of all events taking place this month, click here.
|
||||||
|
Take Action via New Mitochondrial Disease Advocacy Coalition Last week, seventeen mitochondrial disease-focused organizations – including UMDF as the convening organization — announced the launch of the Mitochondrial Disease Advocacy Coalition, a unified body formed to speak with one voice on Capitol Hill on behalf of the estimated 80,000 people living with mitochondrial disease in the U.S. UMDF is proud to work alongside the following organizations on Capitol Hill to accelerate research funding, advance patient-centered legislation, and create a responsive regulatory environment for new therapies: ADOA Association, ATAD3A Patient Advocacy Alliance, Barth Syndrome Foundation, Cure LBSL, Cure Mito Foundation, CureARS, Friedreich’s Ataxia Research Alliance (FARA), Heart of PPA2, Hope for PDCD Foundation, Jeremiah Gracen TK2d Foundation, LHON Collective, MitoAction, MitoWorld, RareDNA Foundation, The Champ Foundation, The Elizabeth Watt PDCD Research Fund. Click here to visit the Advocacy Action Center on mitoadvocacy.org, including:
|
||||||
|
Ask the Mito Doc and Bench-to-Bedside Returns We’re kicking off this month with the return of our Ask the Mito Doc and Bench-to-Bedside series. The science and medical community is invited to join us on Monday, September 14, at 12 PM ET for the Bench-to-Bedside webinar, Creatine and the Brain: Mitochondrial Mechanisms and Therapeutic Opportunities in Neurological Disorders, featuring moderator Zarazuela Zolkipli Cunningham, MD, Children’s Hospital of Philadelphia, and speakers Sergej M. Ostojic, MD, PhD, FACP, Texas Tech University, Lubbock, TX, and Nikola Todorovic, PhD, University in Novi Sad, Serbia. Click here to register. Then, on Tuesday, September 22, at 12 PM ET, the full community is encouraged to join us for the Ask the Mito Doc webinar, POLG: Building Knowledge, Advancing Research, Inspiring Hope, featuring Amel Karaa, MD, Massachusetts General Hospital; Danielle Black, UMDF Clinical Research Coordinator; and William Copeland, PhD, NIEHS. Click here to register and submit your questions. |
||||||
|
Save the Date for Mito Med 2027 in Philadelphia, PA Mark your calendar because Mito Med 2027 is going to be an action-packed event in Philadelphia! For 2027, Mito Med will be extended, with additional days giving patients, families, and clinicians more opportunities to interact, learn, and connect. Save the dates for Sci/Med sessions: June 14 – June 19; for patient and family sessions, from the morning of June 17- June 19. Registration will open in early 2027, so keep an eye on your inbox for updates and more information. |
||||||
|
Exciting Updated Coming to mitoSHARE Are you currently a mitoSHARE user? Our community continues to grow, and every person who joins mitoSHARE helps strengthen our collective voice and expand what researchers can learn about mitochondrial disease. Your participation matters and we want to make it easier for everyone to take part. Later this month, UMDF will begin unveiling a new translation feature on the mitoSHARE platform. This exciting update will allow you to experience mitoSHARE in multiple languages and 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. 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! Click here to join mitoSHARE.
|
||||||
|
Calling Mito Patients Do you or someone you know have a primary mitochondrial disease and myopathy? The MERLIN study is currently enrolling and looking for patients who experience fatigue and muscle weakness. The goal of the MERLIN study is to evaluate how symptoms of fatigue and muscle function change over time in people with mitochondrial disease and assess the variability and progression of these symptoms in patients with primary mitochondrial disease. Participation is remote and requires completing surveys every three months. Click here to see if this virtual study or another open study is right for you.
|
||||||
|
New Study Shows Proof of Concept for New Mental Fatigue Scale Clinicians, researchers and patients have long questioned whether existing fatigue measurements adequately reflect the mental fatigue that accompanies mitochondrial disease. A study published in the Orphanet Journal of Rare Diseases, conducted by researchers from Khondrion, Radboud University Medical Center, and Harvard Medical School, examined those concerns by interviewing 21 patients with the m.3243A>G variant of primary mitochondrial disease. They found existing measurements effectively captured physical fatigue but did not adequately capture mental fatigue, including cognitive fog and exhaustion reported by participants. In response, researchers developed a new instrument, the PROMIS Mental Fatigue Mitochondrial Disease Short Form (PROMIS MF-MD SF), designed specifically to measure mental fatigue in a mito patient population. Testing found both tools were understandable and relevant to patients, with appropriate response options. “We think this study could be a real game changer,” said UMDF Science & Alliance Officer Philip Yeske, PhD. “Our community has long worried that the end points – the goals, if you wish – of clinical trials conducted to-date weren’t accurately reflecting their clinical improvement. The new PROMIS measurement, when combined with existing measurements, shows tremendous potential for a new, improved way to measure clinically significant benefits in trials.”
|
||||||
|
Registration Open for the POLG Externally-Led Patient-Focused Drug Development Meeting Save the date for the POLG Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting on November 17, 2026. Join UMDF, MitoAction, the POLG Foundation, and IMP for this important discussion focused on POLG. This meeting is open to the entire mitochondrial disease community, including patients, caregivers, clinicians, researchers, and industry partners. Click here to register.
|
||||||
|
Signup to receive the UMDF newsletter in your email monthly at umdf.org/newsletter-signup.