January 2025 Newsletter: Mito Med 2025 News, Advocacy Update, CPEO & MELAS Webcasts, and More

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Mitochondrial Medicine 2025
Call For Abstracts Now Open

UMDF's Call for Abstracts for presentation at Mitochondrial Medicine Conference 2025 is now officially open. Make plans to join us at the Hyatt Regency St. Louis at The Arch on June 18-21, 2025.

Platform Sessions this year include:  

  • North American Mitochondrial Disease Consortium (NAMDC)
  • Inflammation and Metabolic Diseases
  • Mitochondria on the Move
  • Mechanisms of Clearing Damaged Mitochondria (mitophagy, autophagy, etc)
  • Multiomics
  • Clinical Trial Updates
  • Mitochondrial Medicine Society Platform Sessions
  • Masterclass for Up and Coming Clinicians and Early Career Investigators

Click here to submit your abstract.

A subset of abstracts will be selected for oral presentation and eligible for four cash awards to be announced on Friday, June 20. For the first time, UMDF will be offering a limited number of travel scholarships for scientific and medical community members. You must submit an abstract to apply for scholarship. More details will be announced soon.

Poster Sessions will be open June 18 - June 21 to give all participants and attendees ample time to network and exchange information. Approved posters will receive more information in April.

Scientific & Medical Agenda for Conference Now Available
You can view the full Scientific & Medical Agenda for Mito Med 2025 at umdfconference.org. Note that the agenda is subject to change based on speaker availability. Stay tuned for more details on Family and LHON programming.


Book Your Mito Med 2025 Hotel Room Now for St. Louis
The UMDF block of rooms for Mitochondrial Medicine Conference 2025 at the Hyatt Regency St. Louis at The Arch for June 18-21, 2025 is now open.  Click here to book now. For planning purposes, please note family programming will once again start Thursday afternoon.

UMDF Advocacy
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​An End-of-Year Missed Opportunity for Congress  

“So close.” That’s the feeling amongst many patient advocacy groups coming out of December’s budget negotiations.

As late as December 18, two days before Congress would need to act to avert a government shutdown, prospects looked good for a bipartisan agreement to fund the government through March 14, 2025, while also advancing a comprehensive package of healthcare policies that included a number of priorities for our community such as:

  • Medicare Telehealth Extensions: A two-year extension of pandemic-era flexibilities, enabling patients to continue receiving care via telehealth at home.
  • Pediatric Priority Review Voucher (PRV) Reauthorization: Extends the FDA's authority to issue PRVs through 2029, incentivizing the development of treatments for rare pediatric diseases.
  • Accelerating Kids’ Access to Care Act: Reduces administrative barriers that delay Medicaid patients’ access to essential care.

However, after growing concerns from some House Republicans and opposition from President-elect Donald Trump — who had demanded the inclusion of a debt limit increase — the broader agreement was abandoned. In response, a pared-down continuing resolution was passed, funding the government into March 2025. It includes three months of funding for expiring healthcare programs, including telehealth flexibilities. It does not include the aforementioned broader reforms like PRV reauthorization and the Accelerating Kids’ Access to Care Act.

We take some comfort in knowing that there is widespread support for these priorities. This relatively short-term extension has left the longer-term outlook uncertain but expect a full-court press for these priorities in February and March of 2025. Stay tuned at umdf.org/advocacy.

UMDF Ask the Mito Doc Webcast Series Focuses on CPEO in January

Join us on January 15 at 7:00 pm ET for our next 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.  Click Here to Register or here to submit your questions in advance.

 WATCH: Available for replay now is last month’s Ask the Mito Doc Wrapping Up 2024 featuring Amy Goldstein, MD of Children’s Hospital of Philadelphia, Hilary Vernon, MD, PhD of Johns Hopkins University, Matthew Snyder, MD of University of Virginia, and Russell Saneto, DO, PhD of Seattle Children’s Hospital. Ask the Mito Doc - December 2024: Closing Out 2024 with the Mito Docs

 WATCH: View our archive of Ask the Mito Doc webinars now on umdf.org.

All Welcome on Bench-to-Bedside Seminar in January Focused on MELAS ​​​​​​

The entire mito community is invited to join moderators Philip Yeske, PhD and Amel Karaa, MD for the upcoming Bench-to-Bedside Seminar on January 13 at 12:00 pm ET, which will include updates for MELAS-related clinical trials.

Prior to the trial updates, speaker Ingrid Tein, BSc, MD, FRCP(C) of the Hospital for Sick Children in Toronto, will present on The Effects of L-arginine on Cerebrovascular Reactivity, Perfusion and Neurovascular Coupling in MELAS Syndrome.

Hear clinical trials updates from: 

​​​​​​Fernando Scaglia, MD – Baylor College of Medicine, Houston, TX
Jan Smeitink, MD, PhD – Khondrion
Chad Glasser, PharmD, MPH – Tisento Therapeutics
Magnus Hansson, MD, PhD – Abliva

Click here to register for the seminar.

 Related Posts: UMDF’s Therapeutic Pipeline page

 WATCH: View all previous Bench-to-Bedside Seminars at umdf.org/benchtobedside.

Other January UMDF Notes 

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Make Joining mitoSHARE Your New Year’s Resolution
If your New Year’s resolution is to help advance mitochondrial disease research, we have the perfect way to make that happen! Lend your voice to surveys, studies, and more by joining the more than 2,000 participants already on 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.

Energy for Life Walkers – Join Your City’s Planning Committee 
UMDF will host an Energy for Life Walk Committee Networking Call on Thursday, January 16 at 7pm ET to share ideas, discuss strategies, and collaborate with Energy for Life Walk committee members from around the country! Request more info or RSVP for the call by emailing [email protected] by January 13.

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​​​​​​​​Become Part of UMDF’s Hope Flies Monthly Giving Program 
UMDF’s Hope Flies monthly giving program offers a “set it and forget it” option for donors looking to make a year-round impact. No matter how much you schedule to give, monthly gifts help chart a course toward treatments and eventual cures for mitochondrial disease by providing a predictable stream of funding year-round. See how you can become part of Hope Flies today at umdf.org/hopeflies.

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Energy Received! UMDF Thanks All Who Donated This Holiday Season 
A special thank you to the hundreds of families who “Gave Energy” this holiday season as part of UMDF’s holiday fundraising campaign, including our two matching sponsors, the Haggerty Family Foundation and ChemistryRX / Summit Health Pharmacy. Thanks to their generosity – and the many donors who gave in the final 48 hours of the year – an extra $15,000 was matched in donations. You can see how UMDF converts your funds into research, education, support and advocacy at umdf.org/impact!

Highlighted Support Meetings and Events

January 13, 12:00 pm - 1:00 pm ET, MELAS-Related Clinical Trial Updates on Bench-to-Bedside

January 15, 7:00 pm - 8:00 pm ET, UMDF Ask the Mito Doc Webcast Series – A Comprehensive Vision: Understanding Chronic Progressive External Ophthalmoplegia (CPEO) from the Eyes to the Body

January 20, 8:00 pm - 9:00 pm ET, Parent and Caregiver Virtual Support Meeting

February 6, 8:00 pm - 9:00 pm ET Adult Virtual Support Meeting

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


View more support events at umdf.org/events-calendar.