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UMDF and The Mito Foundation Announce Research Grant Partnership
The grant cycle is open now through February 28, 2025. Grant award winners will be announced at UMDF’s Mitochondrial Medicine Conference in St. Louis, MO on June 20, 2025. More information, including how to apply, is available at www.umdf.org/research. “UMDF has always been committed to funding the best science in the world, no matter where it’s found. This collaboration reinforces that this is a global effort,” said UMDF President and CEO Kristen Clifford. “We thank The Mito Foundation for their partnership to help fund the research that will chart the path toward treatments, and eventually cures, for mitochondrial disease patients.”
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Mito Med 2025 News
Call For Abstracts Now Open Agendas for Family and LHON programming will be available soon. Note that all presentations are subject to change based on speaker availability. Book Your Mito Med 2025 Hotel Room Now for St. Louis Clinical Research Pavilion to Return; Join mitoSHARE Today to Be Ready You can get a leg up on prep for participating in this year’s Clinical Research Pavilion by joining mitoSHARE, UMDF’s patient registry. mitoSHARE is a worldwide research database for patients (both living and deceased) with any form of mitochondrial disease, as well as their caregivers. A confirmed diagnosis of mitochondrial disease is not required to join mitoSHARE. Patients at any stage of the “diagnostic journey” are encouraged to register. Join today at umdf.org/mitoSHARE. |
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Saol Therapeutics Announces FDA Acceptance of New Drug Application for Potential PDCD Therapy “PDCD is particularly devastating form of mitochondrial disease – especially in pediatric populations,” said UMDF President and CEO Kristen Clifford. “With this NDA acceptance, we’re one step closer to ensuring patients impacted by PDCD have access to an approved treatment that is so desperately needed.” The NDA news comes approximately 16 months after UMDF cohosted a Voice of the Pyruvate Dehydrogenase Complex Deficiency (PDCD) FDA Listening Session, an informal teleconference that allowed FDA staff to connect with PDCD caregivers and patients to help the agency better understand this specific disease and advise clinical trial designs, regulatory thinking, and more.
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UMDF Partners with MitoWorld to Look at Mitochondrial Science in New #BeyondTheDisease Blog
This month, MitoWorld explores topics including mitochondrial division and quality control when nutrients are scarce, how mitochondrial DNA can be copied into the nuclear DNA with potential ill health effects, new temperature measurements of individual mitochondria inside of cells, a conversation with Navdeep Chandel, PhD, about the evolving field of mitochondrial science, and much more. Read the full blog here. |
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Energy for Life 2025 Kicks Off in Florida This Month Energy for Life Walkathons help fund mitochondrial disease research, education, and advocacy, while supporting and connecting mito families. Last year, walkathons brought in over $500,000 across the country, money that is crucial in helping chart the course toward mitochondrial disease treatments and eventual cures. Will You Be Our Valentine? Click here to give and choose your ecard: give.umdf.org/valentines2025. Project for Awesome 2025 |
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 Bench-to-Bedside Seminars February Bench-to-Bedside Explores Mitochondrial DNA Depletion and Deletion Syndrome Research Members of the science and medical communities are invited to join us for our February Bench-to-Bedside Seminar discussing Mitochondrial DNA Depletion and Deletion Syndromes Research on Monday, February 10 at 12:00 pm ET featuring speakers Dr. Ramon Martin, Dr. Javier Ramon, and Dr. Cristina Dominguez. Click here to register. Note: Due to circumstances beyond our control, the Rehabilitative Medicine in Mitochondrial Disease talks originally scheduled for February 10 has been postponed.  WATCH: Now available for viewing is January’s Bench-to-Bedside Seminar Focused on MELAS, including speaker Ingrid Tein, BSc, MD, FRCP(C), of the Hospital for Sick Children in Toronto presenting on The Effects of L-arginine on Cerebrovascular Reactivity, Perfusion and Neurovascular Coupling in MELAS Syndrome and updates for MELAS-related clinical trials from Baylor College of Medicine, Khondrion, Tisento Therapeutics, and Abliva. WATCH: View full archive of Bench-to-Bedside Seminars.Ask the Mito Doc Webinars
February Ask the Mito Doc Focuses on Kearns-Sayre and Pearson Syndromes Join us for the upcoming Ask the Mito Doc focusing on Comprehensive Care in Kearns-Sayre and Pearson Syndromes: Diagnosis, Symptom Management, and Support Strategies on Wednesday, February 12 at 7:00 pm ET. Featured speakers include Rebecca Ganetzky, MD, of Children’s Hospital of Philadelphia, and Sumit Parikh, MD, of The Cleveland Clinic. Click here to register or here to submit questions beforehand. WATCH: Watch our January Ask the Mito Doc Webcast focused on “A Comprehensive Vision: Understanding Chronic Progressive External Ophthalmoplegia (CPEO) from the Eyes to the Body.” Featured speakers include Zarazuela Zolkipli Cunningham, MD, of Children’s Hospital of Philadelphia, and Rustum Karanjia MD, PhD, of University of Ottawa Eye Institute. WATCH: View full archive of Ask the Mito Doc Webinars.Powerhouse Podcasts UMDF Talks with Dr. David Whiteman, along with Special Guest Dr. Jerry Vockley In this January 2025 of the Powerhouse Podcast, we celebrate the career of Dr. 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. Dr. Jerry Vockley, MD, PhD, FACMG, of the University of Pittsburgh, surprise guest and colleague, joined Dr. Whiteman, and UMDF’s Philip Yeske, PhD, to discuss the decades of change in rare and mitochondrial medicine, the challenges of drug development and regulation, and long-awaited developments to come. WATCH: Powerhouse Podcast #36: Dr. David Whiteman WATCH: Powerhouse Podcast Archives | UMDFHighlighted Upcoming Support Events February 12, 12:00 pm - 1:00 pm ET, Support Group for All February 12, 7:00 pm - 8:00 pm ET, UMDF Ask the Mito Doc Webcast Series – Comprehensive Care in Kearns-Sayre and Pearson Syndromes: Diagnosis, Symptom Management, and Support Strategies February 17, 8:00 pm - 9:00 pm ET, Parent and Caregiver Virtual Support Meeting March 6, 8:00 pm - 9:00 pm ET, Adult Virtual Support Meeting View more at support events umdf.org/events-calendar. |
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Two of the world’s largest mitochondrial disease patient advocacy groups are collaborating to double their research impact this June. In late January, UMDF and Australia-based The Mito Foundation announced the 2025 Research Grant Program, which will see the organizations pooling funds to award up to $500,000 in grants focused on research and clinical work to advance cures and treatments for primary mitochondrial disease.
Registration to Open February 17 
Last week, Saol Therapeutics announced the U.S. Food and Drug Administration has accepted a New Drug Application (NDA) for SL1009, Sodium Dichloroacetate Oral Solution to treat the mitochondrial disease Pyruvate Dehydrogenase Complex Deficiency (PDCD). The FDA granted Priority Review for the drug and has set a goal date of May 27, 2025, under the Prescription Drug User Fee Act (PDUFA).
In an effort to keep the community updated on the latest in mitochondrial science, UMDF has teamed up with 
The Energy for Life Walkathon Orlando – 
