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UMDF powers the research, education, & support that is advancing treatments for patients and families affected by mitochondrial disorders.
Pittsburgh, PA
Joined April 2009
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Join people like UMDF Founder, Chuck Mohan, in moving for #mito this month. However you plan to move, your participation supports the #mitochondrialdisease community and patients and families who depend on continued research and progress toward a cure. energyforlifewalk.org/nation…
Our next Bench-to-Bedside webinar is on Monday, October 5 at 12 PM ET. Learn about Mitochondrial Cardiomyopathy: A Contemporary Approach to Clinical Application and Management. To register, visit: bit.ly/4jpbiNA #mitochondrialdisease
Find your support circle at one of UMDF's weekly Virtual Support Meetings. Check our events calendar for log in details and to connect with patients and families in the #mitochondrialdisease community.
umdf.org/events-calendar/
Special thanks to #UMDF advocates Dr. Heather Gatcombe and Howard Korsen who joined 20 or so other patient advocates representing @NutritionEquity to discuss the Medical Foods and Formulas Access Act with Congress. umdf.secure.nonprofitsoapbox…
#HR5684 #S3304 #MedicalNutrition
Congratulations are in order for two longtime members of 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.
If you’re part of the #mito community in #Minnesota, we’d love to see you at our next in-person support meeting! Join us Saturday, October 3, from 10:30 AM–12:30 PM CT at the Golden Valley Library (830 Winnetka Ave N, Minneapolis, MN 55427) for an informal gathering.
Are you a #POLG patient or caregiver? Your voice can help shape the future of POLG research! UMDF, @MitoAction, @PolGFoundation, and IMP invite you to take part in a national survey exploring the journey and daily challenges faced by our community. bit.ly/4h8klB3
#WorldMitoWeek2026 may have concluded, but the work of this community continues, and is seen and appreciated every day. A special thank you to UMDF’s Support Ambassadors for the compassion and support you provide to families and individuals in the #mitochondrialdisease community.
Mitochondrial disease doesn’t have just one cause. Understanding its genetic complexity is another step toward greater awareness, research, and hope. #PuttingMitoOnTheMap #WorldMitoWeek2026
This #WorldMitoWeek2026, urge Congress to ask the FDA to review therapies like dichloroacetate (DCA) -- which is currently under review to treat PDCD - with the timeliness and flexibility rare disease patients deserve. mitoadvocacy.org/wmdw/
Want to learn more about #LBSL? Visit UMDF’s Types of Mitochondrial Disease page to learn more about LBSL, including causes, diagnosis, and available resources. Share this information to help raise awareness during #LBSLAwarenessDay and #WorldMitoWeek2026. umdf.org/lbsl/
Why is having a day like #LBSLAwarenessDay so important? Morgan Voigt, Executive Director of @CureLBSL and a mito mom, answers that question and shares how the LBSL community brings her joy and connection, while fueling her determination to work toward a cure.
#WorldMitoWeek2026
In Part 2 of our interview with Morgan Voigt, Executive Director of @CureLBSL, she shares her daughter Madison’s journey with LBSL and what gives her hope for the future. #WorldMitoWeek2026 #PuttingMitoOnTheMap #LBSLAwarenessDay
This #LBSLAwarenessDay, we spoke with Morgan Voigt, Executive Director of @CureLbsl and a mito mom, who shares what Leukoencephalopathy with Brainstem and Spinal cord involvement and Lactate elevation (LBSL) looks like. Watch Part 1 of her video series during #WorldMitoWeek2026.
This #LHONAwarenessDay, take a moment to learn more about Leber hereditary optic neuropathy (LHON), a rare inherited mitochondrial disorder. One of the primary signs of #LHON is sudden, painless loss of central vision. Learn more: umdf.org/lhon/ #WorldMitoWeek2026
A big thank you to #mito mom Jody Thompson for turning the Perry County Courthouse in Ohio GREEN for the first time EVER! We love seeing new landmarks join in and #LightUpForMito! Take a look at Jody's photos and see how Ohio is #PuttingMitoOnTheMap during #WorldMitoWeek2026.
Dr. Robin Lanzi, Professor of Health Behavior and Psychology at The University of Alabama at Birmingham, and a #mito mom, was recently on @WBRCnews to highlight #LHON and the importance of #LHONAwarenessDay. wbrc.com/video/2026/09/18/mi… #WorldMitoWeek2026 #PuttingMitoOnThemap
Today's the day to go GREEN! Our very own Margaret Moore, Associate Director of Support and Education, captured Niagara Falls supporting #WorldMitoWeek2026 and standing with the #mito community for #LightUpForMito. #PuttingMitoOnTheMap
On #LHONAwarenessDay, we stand with everyone living with Leber Hereditary Optic Neuropathy (LHON and LHON-Plus), their families, and the entire #mitochondrialdisease community. We are grateful for partners like the LHON Collective who collaborate to move this work forward.
Join the #LHON webinar taking place, Saturday, September 19, from 7–9 am EST (1-3 pm CEST) for “Best practices in LHON – stories from the community.” To register, visit: us06web.zoom.us/meeting/regi…
#LHONAwarenessDay #WorldMitoWeek2026 #PuttingMitoOnTheMap