United Mitochondrial Disease Foundation

What Does a Second Trump Administration Mean for the #Mito Community? Read it all in our latest advocacy update at https://lnkd.in/gywci55A

Tisento Therapeutics is sponsoring a research study to talk to individuals about their experience with MELAS. They will be evaluating an investigational drug in an upcoming clinical trial for #MELAS and they need Patient Voices. INTERVIEWING NOW: AGES 12-17. Time will be compensated. Click here for more details and next steps: https://lnkd.in/gNkNZ97f

We're 10 days out from #GivingTuesday -- a day we're committing to make a WORLD of difference for #mito patients like Noah. This year on Tuesday, DECEMBER 3, we ask you to participate in this day of radical giving -- save the date to choose UMDF and #GIVE4CURES for #mitochondrialdisease. Let the WORLD know: umdf.org/tuesday2024

We're thrilled to announce that The Mito Fund, United Mitochondrial Disease Foundation’s venture philanthropy arm, has invested in Khondrion progression of our lead asset, sonlicromanol. https://lnkd.in/eejSZCM9 Our lead candidate, sonlicromanol, is advancing toward Phase III trials for adult primary mitochondrial disease (PMD) patients with the m.3243A>G mutation. Recent Phase IIb results published in Brain publication showed promising benefits in patient quality of life, mood, fatigue, pain, and balance control. To receive this investment is a vote of confidence from UMDF's expert-led venture philanthropy investment committee and board of trustees. Together, we're one step closer to delivering innovative treatments for the PMD community. #MitochondrialDisease #RareDiseases #Biotechnology #ClinicalTrials #PatientImpact

UMDF is thrilled to announce that our venture philanthropy initiative, The Mito Fund, has invested in Khondrion for the progression of their lead candidate, sonlicromanol. Sonlicromanol is advancing toward a Phase III trial for adult primary mitochondrial disease (PMD) patients with the m.3243A>G mutation. Recent Phase IIb results published in Brain showed promising benefits in patient quality of life, mood, fatigue, pain, and balance control. Click here for the full press release: https://lnkd.in/gKaGZa-4

This holiday season, we’d love to introduce you to Scarlett and Kendall - The Mighty Mito Twins. These four-year-old twin sisters have THG1L disorder, a #mitochondrialdisease that heavily disrupts energy production to the brain and muscles. There is no approved treatment or cure. You can make the difference for Scarlett, Kendall, and an estimated 65,000+ other children and adults living with #mito in the U.S. today. #GiveEnergy: www.umdf.org/energysocial

UMDF has co-signed a Letter to Congress to encourage action on End of Year priorities. Read the Full Letter here: https://lnkd.in/g6B93ykB

The patient experience -- it's so much MORE than data. It's the best way to advise patient-focused drug development. Add your patient or caregiver voice to the worldwide patient registry for #mitochondrialdisease. Be a part of MORE. Join at umdf.org/mitoshare

Today, we're shining a light on our Walk Committee members from the Energy for Life Walk Charlotte! Thank you to Amanda Crowe, Christy Koury, Daniella Ball, Meredith Hobbs, Sarah Helline, Taylor Conner, and Hadley Shields. Volunteers like you make all the difference! If you're interested in helping with an #EnergyforLife event in your community, please reach out to [email protected]

REMINDER: Mindfulness with Mary and the Clinical Trial Readiness Support Group are BOTH meeting this Tuesday, Nov 19 at 12pm ET! Visit our event calendar for all upcoming meetings: umdf.org/events-calendar