United Mitochondrial Disease Foundation

mitoSHARE is a global patient-populated registry bringing together data from #mito patients and caregivers across the entire #mitochondrialdisease community. We're calling all patients and caregivers with MELAS, MERRF, Leigh Syndrome, and Primary Mitochondrial Myopathy to join today in preparation for upcoming studies. Be #ResearchReady! Join at https://lnkd.in/ggBFiJHu

Watch the latest segment of the Hauners' "Our MELAS Story," featuring Chelsea's Daily Life as a patient with #MELAS. Their lives with MELAS are different, but mom Alysia and daughter Chelsea work to keep every day simple, positive, and fun. MELAS, or Mitochondrial encephalomyopathy with lactic acidosis and stroke-like episodes, is a #mitochondrialdisease. Watch the full video at umdf.org/MELAS

Hope Flies recurring donors -- generous supporters who give monthly, quarterly, annually toward the UMDF mission -- are lighting the path for patients with #mitochondrialdisease. Thank you to all who sustain critical programming all year round! YOU can light the path for the #mito community -- join Hope Flies at any time: umdf.org/hopeflies

The global theme of this year's #WorldMitoWeek is #IlluminateTomorrow. It's less than a month away -- Sept 16-22. 🌎💚💡 Help us #IlluminateTomorrow on #WMDW, today and everyday! Download, share, and make a plan to tell your story. Find shareables like these at https://lnkd.in/dWc_U9c

We had the opportunity to catch up with Dr. Suraiya Haroon, PhD of Children's Hospital of Philadelphia about her work on translational research for mtDNA Deletion Syndromes. Special thanks to The Cavan McGovern Family Fund, The Kamaria Satcher Fund for Kearn’s-Sayre Syndrome, and The CPEO/KSS Project Fund for their generous funding of Dr. Haroon's promising work. For more info about UMDF-funded projects, visit umdf.org/research

Thank you to Sid Gornall, friends, and supporters working to put #mitoonthemap in September! Check out how to join them at the link below💚 Cheers, cheers, cheers from across the pond!

Looking for answers? We're providing access to no-cost genetic testing to those suspected of having mitochondrial disease with the UMDF Physician-Initiated No-Cost Genetic Testing Program, hosted in partnership with Probably Genetic. Talk to your doctor about this opportunity. Find more info at https://lnkd.in/gb3VZt-Y

Calling all #MNGIE patients!

HURRY! 💚⚡️ ⏱ Grab one of these Limited Edition #mito designs before #WorldMitoWeek, Sept 16-22! Multiple designs available in multiple colors on tees, sweatshirts, hoodies, ladies tees and youth sizes! Don't delay! The shop closes on these designs THIS FRIDAY, AUG 23. Visit https://lnkd.in/gGt-ehgN

Taking literal steps to raise awareness 👏👏👏-- check out this story from Jacob Young, outfielder for the Washington Nationals. At Players' Weekend, he wore a purple cleat to raise awareness for Hodgkins Lymphoma in honor of his wife, Caroline, and a green cleat for #mitochondrialdisease awareness in honor of his sister, Stacy. Thank you to Jacob, Caroline, Stacy and family for raising awareness and letting so many know that they're not alone! 💚 And thank you Jessica Camerato for covering the story for the Major League Baseball (MLB) Network. #MLB #WashingtonNationals #PlayersWeekend https://lnkd.in/gKKAn82b