The United Mitochondrial Disease Foundation hosts the Powerhouse Podcast to discuss all things related to mitochondrial disease, research, and the patient journey. Featured guests include patients, caregivers, researchers, physicians and passionate advocates.
How Mitochondrial Research Moves Forward: From Patient Experience to Scientific Discovery
Every breakthrough in mitochondrial disease research starts the same way – with a patient's voice. This episode traces that full journey: how listening to patients shapes the questions researchers ask, how natural history studies build the foundation for understanding a disease, and how that knowledge translates into clinical trials designed to test real therapies. Along the way, we'll explore why this only works when patients, clinicians, researchers, advocacy organizations, and industry all row in the same direction – and why that collaboration is what ultimately accelerates the path to treatments and cures.
Featuring
• Philip Yeske, PhD, Science & Alliance Officer, United Mitochondrial Disease Foundation
• Kristie Cline, Head of Patient Advocacy, Pharming
• Magnus Hansson, MD, PhD-VP and Clinical Development Head for Mitochondrial Disease, Pharming
• Danielle Black, MPH, Clinical Research Coordinator, United Mitochondrial Disease Foundation
6 Nov 2025
Powerhouse Podcast: Making Sense of Mito - FBXL4-Associated Mitochondrial Disease
Introducing a special episode of the Powerhouse Podcast: Making Sense of Mito - FBXL4-Associated Mitochondrial Disease. This special edition episode spotlights researchers and the years of scientific work to understand FBXL4 alongside the stories and perspectives of parents of children impacted by FBXL4-associated mitochondrial disease. Helping to Make Sense of Mito are our co-hosts: two researchers from Washington University in St. Louis, Keri-Lyn Kozul, PhD and Hannah Pletcher, and mito mom/podcaster/foundation co-founder, Susan Geoghegan.
This special episode bridges the gap to tell the story of FBXL4, bringing together the "team" working toward treatments, including the patient families and the scientists
FEATURED GUESTS · Janice Belcher, mom to Juliet · David Alsina, PhD, Laarson Lab at Karolinska Institute, Sweden: https://ki.se/en/people/david-alsina
o The Laarson Lab: https://molmet.ki.se/nils-goran-larsson · Mike and Susan Geoghegan, parents to Lorelei and Benji · Julia Pagan, PhD, Pagan Lab at University of Queensland, Australia: https://biomedical-sciences.uq.edu.au...
o The Pagan Lab: https://biomedical-sciences.uq.edu.au... · Natalie Niemi, PhD, Niemi Lab at Washington University, St. Louis, MO, US: https://biochem.wustl.edu/faculty/niemi o The Niemi Lab: https://www.niemilab.com
· Kevin and Courtney Kline, parents to Emery Special thanks to the families who contributed photos of their children.
REFERENCED IN THIS EPISODE Apricity Hope Project: https://apricityhope.org When Autumn Comes: https://apricityhope.org/autumn/ Live Like Lorelei: Amazon link to purchase UMDF's Mitochondrial Medicine Conference: https://umdfconference.org/
8 Oct 2025
POWERHOUSE Oct 2025: Team Activate Charity Runners for Chicago Marathon
Our Powerhouse Podcast for October features Morgan Crowley, DC, a chiropractor from Michigan, and Diego Santos, a medical student at Geisinger Commonwealth School of Medicine and Researcher at CHOP. Both of these incredible panelists have been training, fundraising, and spreading awareness on UMDF's #TeamActivate for the Bank of America Chicago Marathon on Sunday, October 12 -- all in service to our community with mitochondrial diseases. To them, the marathon is a bonus. It's the cause -- the mission -- that is primary. We can't be more grateful and motivated by two people who care for patients with #mitochondrialdisease in their professions AND spend their personal time fundraising toward treatments and cures. We're cheering for them and all of our Team Activate runners, who have dedicated every mile toward making a difference. #fueledbymitochondria
Follow Morgan's Run Journey on Facebook/Instagram @chiroontherun
Follow Diego's Run Journey on Instagram @jd_santos26
Give in support of Team Activate runners at umdf.org/teamactivate
23 Sept 2025
Powerhouse Podcast: an Introduction to Special Episode - Making Sense of Mito
We'd proud to introduce you to Making Sense of Mito - FBXL4-Associated Mitochondrial Disease. In this new episode (dropping soon), Dr. Keri-Lyn Kozul, PhD and Hannah Pletcher, researchers from Wash U St. Louis, and Susan Geoghegan of Apricity Hope Foundation team up to weave the science and the patient journeys together into the story of FBXL4, an ultra rare mitochondrial disease. Listen in as we tease out how this special episode came to be and the hopes for all it will become to both our research and patient communities.
Featured Guests:
Keri-Lyn Kozul, PhD and Hannah Pletcher
Niemi Lab at Washington University, St. Louis
https://www.niemilab.com
Susan Geoghegan
The Apricity Hope Project
https://apricityhope.org/susan-geoghegan/
25 Jan 2025
POWERHOUSE Podcast Jan 2025: Celebrating Dr. David Whiteman
In this episode, we celebrate the career of David Whiteman, BM, BCh, FAAP, FACMG, currently a Principal Consultant at Blue Lobster Discovery. With 30 years of experience in academic medicine as a specialist in genetics and metabolics and 20 years of experience in drug development and pharmaceutics, Dr. Whiteman has dedicated his career to the care of patients and treatment of rare diseases, including mitochondrial diseases.
Joined part-way through the episode by surprise guest and colleague, Dr. Jerry Vockley, MD, PhD, FACMG of the University of Pittsburgh, UMDF’s Philip Yeske, PhD, Dr. Whiteman, and Dr. Vockley discuss the decades of change in rare and mitochondrial medicine, the challenges of rare disease drug development and regulation, and long-awaited developments to come for the mito community.
26 Nov 2024
POWERHOUSE Podcast Nov 2024: Team Activate Goes the Distance
Runners from UMDF's 2024 Team Activate share their training tips, race day experiences, and fundraising efforts, inspiring others to go the distance for mitochondrial disease research.
30 Oct 2024
POWERHOUSE Oct 2024: Olivia Chambers, Paralympic Swimming Gold and Silver Medalist
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
30 Sept 2024
Powerhouse Special Edition on Advocacy with Miranda Franco
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.
4 Sept 2024
Mito Moms for World Mitochondrial Disease Awareness Week
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.
30 Jul 2024
POWERHOUSE July 2024: Leslie Kirby, Co-Founder of Run4Raley
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
10 May 2024
Mother's Day Special Edition Powerhouse May 2024 with Becca Johnson
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.
30 Apr 2024
POWERHOUSE April 2024: The Mito Fund & Pierrepont Therapeutics
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.
29 Mar 2024
MORE than a Powerhouse featuring Divakar Mithal, MD, PhD
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.
26 Feb 2024
POWERHOUSE Feb 2024: Heart Month featuring Heather Gatcombe, MD
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 (https://www.youtube.com/hashtag/heartmonth). Listen as we talk about navigating the complications of mitochondrial disease and heart transplant.
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1 ratings
Podcast Authority Score: 36 / 100
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30
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0
YouTube
76
Engagement
32
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