NY Jets Player and Coach Team Up to Support Mito Community

UMDF is proud to share New York Jets Safety Malachi Moore and Jets Coaching Operations Coordinator Maddie Johnson are supporting UMDF as part of the NFL’s “My Cause, My Cleats” campaign.

"This cause is so important to my heart because I had a friend who was in my mom's Kindergarten class named Henrietta, and she was diagnosed with mitochondrial disease," said Malachi in a video on the Jets website. "And last summer, she passed away. This is a way for me to keep her legacy alive and also bring awareness to her condition."

As part of his support, Malachi took the field during Week 13 wearing customized UMDF cleats. Many of the cleats will be auctioned off on NFL Auction to raise money for their respective causes. Each participant also has a customized link to their featured charity to increase awareness and simplify the donation process for fans interested in supporting the case. ​​​​​​

​​​​​​WATCH VIDEOS  A Closer Look at Jets Participating in Annual My Cause My Cleats Campaign ​​​​​Malachi talks about his relationship with Henrietta:  SEC Network    College GameDay.

UMDF Partners with MDA on Two New Research Grants

UMDF has teamed up with Muscular Dystrophy Association (MDA) to co-fund two new research projects to accelerate the development of promising therapies.  

“Collaboration is at the heart of everything we do at UMDF, so working alongside MDA to co-fund mitochondrial disease research aligns perfectly with our mission,” said UMDF’s Science & Alliance Officer Dr. Philip Yeske. “A strong history of attracting high-quality research proposals and a shared commitment to rigorous peer review make MDA an ideal partner in the quest for mitochondrial disease treatments and cures.”

Read the full announcement and grant descriptions on umdf.org.

Amongst the projects co-funded:

• Mariena D’Aurelio, PhD, Weill Medical College of Cornell University, will receive $299,973 for “Modulating ER stress-induced lipotoxicity to ameliorate mitochondrial myopathy.” 
• Alba Pesini Martin, PhD, Columbia University Irving Medical Center, will receive $210,000 for “Investigating MAM domains and neuronal function in Coenzyme Q10 deficiency.”

Join UMDF’s Team Activate in the 2026 Bank of America Chicago Marathon

Love running? We invite you to join UMDF’s Team Activate at Bank of America Chicago Marathon in 2026.

Start the process by completing our prescreening form by December 31. If you are selected as a part of Team Activate, you are provided guaranteed entry to the Bank of America Chicago Marathon on October 11, 2026, with no lottery or other qualifying requirements to run. In return for the guaranteed entry, runners are required to raise $2,200 in support of the UMDF’s mission. Runners are also responsible for their registration fee and associated travel costs.

Throughout your fundraising journey, UMDF will provide regular check-ins, guidance, and support to help you reach your fundraising goals. Currently, we do not offer any marathon training support.

If you have any questions before submitting your form, contact kelsi.martinez@umdf.org.

CME Courses from MitoMed 2025 Now Available on Mito U

UMDF’s online learning platform, Mito University, now has all recordings from the Mitochondrial Medicine Conference 2025 in St. Louis available for viewing.

Amongst the programs, you’ll find CME opportunities from Mitochondrial Medicine Society and UMDF’s first-ever Masterclass, along with a variety of non-CME topics.

 Click here to browse videos and enroll.
 

Masterclass Sessions

• Course Overview
• Multidisciplinary Manage and Acute Care
• Novel Dx Approaches
• Patient Stories & Case Study of TK2d
• Symptom Management
• Primary Mitochondrial Myopathy Overview

Mitochondrial Medicine Society Sessions

• ICU Management with Acidosis Focus
• Update on Stroke Management in the Mitochondrial Disease Patient    
• Case Studies - MELAS/POLG
• Navigating Catastrophic Mitochondrial Complications    

The 2025 Masterclass is funded via a medical education grant by UCB.
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Bench-to-Bedside Focused on Clinical Trials Open to All

All in the community are welcome to join us on December 8 at 12pm EST for a Bench-to-Bedside Seminar focused on Clinical Trial Updates, featuring updates from:

• Susan Van Meter, PhD, UCB
• Katie Landes, Stealth BioTherapeutics
• Magnus Hansson, MD, PhD, Abliva – Member of Pharming Group
• Chad Glasser, PharmD, MPH, Tisento Therapeutics
• Jasper Levink, CEO, Khondrion

Click here to register.

November’s Bench-to-Bedside Presentations Now Available for Replay
 Preclinical Rationale for Muscle Stem Cell Therapy for Myopathy and Fatigue Due to mtDNA Mutations 

 Clinical Development of a Muscle Stem Cell Therapy for Mitochondrial Muscle Disease 

Ask the Mito Doc Wraps up the Year

Join us on December 17 at 7pm EST for a Ask the Mito Doc Webinar – “Wrapping Up 2025 with our Mito Docs” – featuring moderator Margaret Moore, UMDF Associate Director of Support & Education, along with speakers:

• Gregory Enns, MD, Stanford Medicine, Palo Alto, CA
• Bruce Cohen, MD, Akron Children’s Hospital, Akron, OH
• Jaya Ganesh, MD, Icahn School of Medicine at Mount Sinai, New York, NY
• Matthew Snyder, MD, University of Virginia Health, Charlottesville, VA

Click here to register or here to submit questions.

November Ask the Mito Docs Now Available for Replay
 Genetic Testing in Mitochondrial Disease – What Patients and Families Need to Know

 Special Edition: FDA Approval of Kygevvi for TK2d

Participants Needed for Fatigue and Mobility Study in mitoSHARE

UMDF is seeking participants for “The MERLIN Study: a mitoSHARE Sub-Study Exploring Fatigue and Mobility,” which is now live on mitoSHARE.

You may be able to join the study if:

• You are 18 years or older
• You have a confirmed primary mitochondrial disease diagnosis caused by a known pathogenic gene mutation or deletion in the mitochondrial DNA that affects more than one body system
• You are experiencing fatigue, muscle weakness, and/or exercise intolerance
• You register/are registered in mitoSHARE

Other criteria will include sharing your pre-existing data in mitoSHARE, completing online questionnaires concerning your experiences with fatigue and mobility every 3 to 6 months, and performing the 30 second sit-to-stand test every 3 to 6 months.

“Using mitoSHARE to conduct clinical research studies like MERLIN represents an important new addition to the mitochondrial disease research ecosystem,” said Dr. Philip Yeske, UMDF’s Science and Alliance Officer. “We now have the capability to engage patients in clinical research such as natural history data collection and outcome measurement validation. Ultimately learnings from the MERLIN study will strengthen and improve future drug clinical trials."

If you’re already a mitoSHARE participant, simply email Nicole Wilson at registry@umdf.org to learn more. If not, register now at umdf.org/mitoSHARE.

Call for Abstracts for MitoMed 2026 Now Open

UMDF’s Call for Abstracts for Mitochondrial Medicine 2026 in Orlando, FL on June 17-June 20, 2026, is now open.

All submissions will be peer-reviewed by the Abstract Review Committee. Approximately 20 abstracts will be selected for oral presentations during select platforms. All approved submissions will have the opportunity to share their projects during the dedicated poster sessions. Cash awards will be presented to winners during the meeting for the top four abstract presentations. Submit your abstracts here.

Platform Sessions this year:

• Novel Therapeutic Windows in Mitochondrial Disease
• Small-Molecule & Pathway Therapies
• Nuclear Gene Therapy
• mtDNA-Targeted Therapeutics
• Leigh Syndrome
• Masterclass focused on MELAS

REMINDER: Submitting an abstract does NOT include registration to attend the meeting. Please direct all abstract submission inquiries to abstracts@umdf.org.

2025 No-Cost Genetic Testing Wrapping Up – Limited Number of Tests Remain

A limited number of tests remain for 2025 in UMDF’s Patient-Enabled No-Cost Genetic Testing Program, which runs through Probably Genetic.

Patients can find instructions on how to explore their eligibility on the Genetic Testing page of umdf.org. Requirements include that the patient reside in the USA, never had whole exome or whole genome sequencing, be without insurance (or without insurance that would cover costs for such tests) and demonstrate a high likelihood of a primary mitochondrial disease diagnosis based on information provided during the intake process.

This is the fourth variation of UMDF no-cost genetic testing offered. More than 750 patients have received results that have furthered their understanding of their diagnosis thanks to such programs.

Give Energy to Patients like Patrick this Holiday Season

This holiday season, we’re featuring Patrick, an 18-year-old living with Alpers syndrome, a mitochondrial disease caused by mutations in the POLG gene. Read his full story at umdf.org/give-energy.

There are an estimated 350 variations of mitochondrial disease. As of today, only two of those forms have an FDA-approved treatment – Forzinity for Barth syndrome, and Kygevvi for TK2d. Thanks to your support, that's changing. More than a dozen potential therapies are now in development for mitochondrial diseases – progress that once seemed impossible.

For POLG patients like Patrick, UMDF’s efforts could take many forms. For instance, UMDF is collaborating with the POLG Foundation to launch a new POLG natural history study, a critical step toward developing lifechanging therapies.

And perhaps just as exciting, UMDF’s venture philanthropy arm – The Mito Fund – has even begun making investments to help move therapies forward. Earlier this year, The Mito Fund, invested in Pretzel Therapeutics to help accelerate PX578, a promising therapy focused on restoring mitochondrial DNA function for POLG-related diseases like Patrick's. PX578 just entered Phase 1 clinical development in the United States.

Your gift today helps turn scientific potential into real hope for families like Patrick's. Give Energy to patients like Patrick today.

An anonymous donor has offered a $25,000 match for gifts received by December 15. Every dollar you give will be doubled to move therapies forward faster and bring hope to families like Patrick’s.

Click here to donate to UMDF.