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On this November's Powerhouse Podcast episode, we're proud to feature runners from our 2024 UMDF Team Activate who fundraised and ran in the Bank of America Chicago Marathon. Listen in as Micah, Lisa, and Aaron share with us their training tips, race day peaks and valleys, and their experiences putting their miles toward the mission of UMDF. If you're interested in going the distance toward treatments and cures for mitochondrial disease like these runners, contact us about a spot on our 2025 Team Activate charity team. Email [email protected]
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This month, we meet with Olivia Chambers, a college athlete at the University of Northern Iowa. She has faced many challenges due to multiple mtDNA deletions, which have primarily impacted her eyesight. Olivia, 2024 Paralympic gold and silver medalist, joins us to talk about her passion for distance swimming, being a Paralympian, the onset of mitochondrial disease for her at age 16, and life with vision loss. Don't miss this Powerhouse! 00:00 - 21:00 -- A Passion for Swimming and Being a Paralympian 21:35 - 41:35 -- Vision Loss as a Teen and Finding a Mitochondrial Disease Diagnosis 42:10 - 60:00 -- College Life and the Help and Support of Assistive Tech, Family, and Friends
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On this special edition of the Powerhouse Podcast, Miranda Franco, Senior Policy Advisor for Holland & Knight, joins us for a recap of new movements in mito-related legislation and the ways we could use your help in governmental advocacy for the mitochondrial disease patient community. Take action at umdf.org/advocacy.
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This latest episode of the Powerhouse Podcast is all about sharing your story and raising mito awareness. For this special edition Powerhouse, we had amazing talks with:
Lindzi Scharf, Mito Mom, Journalist and founder of Retaility.com Linda Ramsey, Mito Mom, UMDF Support Ambassador, and 2024 Energy Award Winner Nikki Huggan, Mito Mom, UMDF Support Ambassador, and Vice-Chair of PA's Families to the Max.With World Mitochondrial Disease Week 2024 around the corner, we dig deep into all the many ways that we can tell mito stories and pave the way for other patients and families with mitochondrial diseases-- whether in published works, social media sharing, grassroots presentations, or even advocacy work on the state level. #IlluminateTomorrow and Raise your Voice.
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Join us for the Powerhouse Podcast this month featuring Leslie Kirby, co-founder of Run4Raley, as the Kirby family is heading into their 17th year of their fundraising event in Philo, IL. Leslie shares about the work they've done as a tribute to their daughters, Raley and Aubree, at their local hospital and in fundraising for UMDF to help other families like them. Learn more about Run4Raley and Hope4Aubree at run4raley.org
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At the beginning of this Mother's Day Special Episode of the Powerhouse, UMDF's Cassie Franklin and Kara Strittmatter give a quick overview of exciting things to expect at #MitoMed 2024 in Cleveland. Then, we meet our special guest for this episode, Becca Johnson -- mito mom to Vera, caregiver, teacher, wearer of many hats and a true POWERHOUSE. Becca shares important insights on living for experiences, finding your resources, and growing into strength as a mito mom.
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In this latest episode, join UMDF's Brian Harman and Dr. Philip Yeske in a talk with guests, Todd Lacey from the UMDF Board of Trustees and Dan DiPietro, Co-Founder of Pierrepont Therapeutics. On the advent of The Mito Fund's inaugural investment in Pierrepont's enzyme replacement therapy for patients with MNGIE, they share insight on the potentially game-changing research investment and new strategic partnership.
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On the March 2024 Powerhouse Podcast featuring Dr. Divakar Mithal, MD, PhD, from Lurie Children's Hospital and Northwestern University in Chicago, we discuss his journey toward mitochondrial medicine, embracing a legacy of empathy, mentoring the next generation, and mito-centrism.
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On this special episode of the Powerhouse Podcast, we're honored to host Heart Mom and Mito Mom, Heather Gatcombe, MD. This is truly a patient-family story with heart--perfect for #HeartMonth. Listen as we talk about navigating the complications of mitochondrial disease and heart transplant.
