United Mitochondrial Disease Foundation

Join UMDF each week at one of our Virtual Support Meetings to connect with patients and families navigating a #mitochondrialdisease diagnosis. Visit our events calendar for upcoming meetings and login details.  umdf.org/events-calenda…

Join UMDF in welcoming four new board members to our Board of Trustees — Raeka Aiyar, PhD, Michael Daly, Timothy Jalbert, CPA, and Heather Schichtel. Read more about our new board members and their commitment to the #mitochondrialdisease community at umdf.org/about/board-tr….

Do you know about the Hidden Disabilities Sunflower network that discretely assists travelers with non-apparent disabilities? If you’re attending our #MitoMed Conference from June 17-20 in FL, and need support at the airport, this is a great resource. hdsunflower.com/us/insights/po…

Last week, some of our UMDF staff were at the @MDAorg’s conference in Orlando, FL where they caught up with clinicians and industry partners in the #mitochondrialdisease space. Check out some of the photos our team captured from their time at the conference.

Be the energy with UMDF in St. Louis, MO! Register to walk for #mitochondrialdisease awareness and funding on Saturday, May 16 at 9 am CST at Tilles Park, Gloria Rodgers Shelter (9551 Litzsinger Road). energyforlifewalk.org/stlouis

Couldn’t make it to our last Bench-to-Bedside #webinar? You can now watch the replay from our March 2026: Clinical Trial Readiness - Clinical Research Pavilion 2026 with Amel Karaa, MD of Massachusetts General Hospital. #mitochondrialdisease youtube.com/watch?v=d4QKoz…

Thank you @Newsweek for highlighting how regulatory hurdles risk leaving #mitochondrialdisease families behind. We’re proud to stand beside @HopeforPDCD in calling for the FDA to find a pathway forward to DCA. Lives are on the line. @cure_mito @MitoAction newsweek.com/mothers-terrif…

Today’s the perfect day to wear your green. Show your support for #mitochondrialdisease awareness while celebrating #StPatricksDay. Tag us @UMDF on social so we can see your green!

March 16-22 is #BrainAwarenessWeek! As reported by our mitoSHARE Patient Registry, which highlights the significant neurological impact of primary #mitochondrialdisease, more than 73% of mitoSHARE participants report brain or neurological issues. umdf.org/mitoshare-regi…

Our monthly UMDF Connect #newsletter is live and full of updates for the #mito community that you won’t want to miss. From our time advocating for #mitochondrialdisease patients and families in Washington, DC to research updates, replays, and more. Visit: umdf.org/mar26_newslett…

One of the #mito moms who joined UMDF on Capitol Hill for #RareDiseaseWeek -- @hopeforpdcd Founder Frances Pimentel -- visited the @GlobalGenes podcast to talk about Pyruvate Dehydrogenase Complex Deficiency (PDCD) on “When Endpoints Miss the Point.” globalgenes.org/podcasts/

Support is just a click away! Join one of UMDF's upcoming Virtual Support Meetings where patients and families can connect, share experiences, and find encouragement in the #mitochondrialdisease community.  umdf.org/events-calenda…

Immediate Advocacy Action Needed! Ask Your House Member to Support #MitochondrialDisease Research Funding in FY26 Appropriations. The deadline is March 18 for representatives to sign on. igniteadvocacy.com/go/ask-your-ho…

Interested in joining an in-person support meeting while attending the UMDF #MitoMed Conference in Orlando, FL, June 18–20? We are planning in-person support group meetings on Friday, June 19. Email us at mitomed@umdf.org by May 1 to join. #mitochondrialdisease

Thank you, @people, for sharing PGA golfer Akshay Bhatia’s story, and raising awareness for #mitochondrialdisease patients and their families. @hopeforpdcd people.com/golfer-akshay-…?

We're excited to announce that our new 2026 Energy for Life website is now live! Join us in walking for the #mito community by visiting energyforlifewalk.org to find a walk near you, start fundraising, and connect with others who share a common goal. #energyforlife

Our thoughts are with PGA golfer Akshay Bhatia, who dedicated his win to his niece Mia, who passed away from Pyruvate Dehydrogenase Complex Deficiency. Stories like Mia's are why it’s critical the @US_FDA move forward for DCA for the #PDCD community. @hopeforpdcd @Russ_Steinberg

Save the date for a special Ask the Mito Doc webcast on Friday, March 20 at 12 PM EST with Sarah Chang, PhD, Medical Strategy Lead, UCB, who will provide Updates on the New #TK2d Therapy, #Kygevvi. Submit questions: bit.ly/3Pu18yb | Register: bit.ly/4slUybX

Nominations are open for our 2026 Volunteer Awards! Know someone who’s making a difference as a UMDF #volunteer? Recognize their dedication to supporting people living with #mitochondrialdisease by nominating them for an award by April 15. surveymonkey.com/r/umdfawards

Reminder: The Family Planning Survey in collaboration with @cure_mito and LHON Collective is still open! Share your thoughts with us and help shape the role advocacy groups like UMDF should play in the family planning space. #mitoawareness surveymonkey.com/r/SBB5C3P