UMDF Marks 30 Years of Serving the Mitochondrial Disease Community

As we welcome the new year, UMDF is proud to celebrate a remarkable milestone: thirty years of service to the mitochondrial disease community.

UMDF was launched as a grassroots effort by Chuck Mohan, Jr., following the diagnosis and passing of daughter Gina to mitochondrial disease. What started as a small, volunteer-led initiative has since grown into a $4 million national nonprofit organization that supports the mitochondrial disease community through research funding, patient education, and comprehensive support services.

Kara Strittmatter, UMDF Director of Support and Education, was the first UMDF employee.

“We initially worked out of Chuck’s basement,” she said. “It was a shoestring budget for years, doing whatever we could to move the ball forward. It’s incredible to see all the progress we’ve made over the years.”

From those modest beginnings, UMDF has helped fuel a disease space that now includes two approved therapies for forms of mitochondrial disease and nearly a dozen more therapies in some form of clinical trials.

“It’s clear this 30-year milestone would not be possible without the passion, resilience, and unwavering dedication of our community, whose voices and advocacy have powered every step forward,” said UMDF President & CEO Kristen Clifford.

“While we are proud to honor three decades of progress, this milestone is not just a moment of reflection, it is a call to action. With multiple therapy approvals in 2025, our community has real momentum. We must seize this moment. In the coming months, we’ll be unveiling a new strategic plan with a bold vision to accelerate research, expand access to high-quality care, increase awareness, and strengthen our impact for the next generation of the mitochondrial disease community.”

 Watch a special New Year's Day message from UMDF President & CEO Kristen Clifford on Facebook

January Ask the Mito Doc

Join us on January 20 at 7:00 pm EST for an Ask the Mito Doc focused on “Cardiac Mito 2026: Genetics and Clinical Insights to Jumpstart the Year.”

Click here to register or here to submit questions beforehand.

Moderator:
Margaret Moore, UMDF Associate Director of Support & Education

Speakers:
Hilary Vernon, MD, PhD, Johns Hopkins University School of Medicine
Andreas S. Barth, MD, PhD, FAHA, Johns Hopkins University School of Medicine
Rebecca McClellan, MGC, CGC, Kennedy Krieger Institute

Ask the Mito Doc Replay: 
 Ask the Mito Doc - December 2025: Wrapping Up 2025 with Our Mito Docs
 Click here to view the full 2025 Ask the Mito Doc playlist on YouTube.

February Bench-to-Bedside 

Join us on February 9 at 12:00 pm EST for a Bench-to-Bedside seminar focused on “MitoCon 2026 Debrief: Emerging Trends, AI Tools & Translational Progress,” featuring Michelangelo Mancuso, MD, PhD, Neurological Institute, of the University of Pisa & AOUP in Italy. Click here to register.

Replay (Dec 2025): 
 Bench to Bedside - December 2025: Mitochondrial Disease Clinical Trials Updates
 Click here to view all Bench-to-Bedside Seminars in 2025

UMDF Advocacy: Bills We’ll be Watching in Early 2026

Medical Foods and Formulas Act

After years of advocacy from UMDF and mito families, it appears The Medical Foods and Formulas Act, formerly the Medical Nutrition Equity Act, may get its day in Congress.

In October, Rep. McGovern (D-MA), co-chair of the Mitochondrial Disease House Caucus, introduced The Medical Foods and Formulas Act, which would expand public insurance coverage of foods and formulas that are medically necessary for the management of certain digestive and metabolic disorders and conditions.

While the bill will now need reintroduced in the 120^th Congress, simply getting the bill in front of Congress marks progress. Some form of the legislation has been under consideration for nearly a decade.

“We’ve heard from too many families spending hundreds or even thousands of dollars a month out of pocket simply to keep their loved one alive,” said UMDF President and CEO Kristen Clifford. “This bill would be a critical first step in helping ensure every mito patient has access to medically necessary nutrition. We look forward to working alongside Rep. McGovern and other metabolic-focused disease groups to advocate for its passage.”

In December 2016, Congress passed improved coverage for medical nutrition for military families enrolled in TRICARE as a part of the National Defense Authorization Act. The new bill would  expand “medically necessary nutrition” coverage to include patients covered under Medicaid, the Children’s Health Insurance Program (CHIP), Medicare, and the Federal Employee Health Benefit Program.

Give Kids a Chance Act

After passing the House under unanimous consent, the Give Kids a Chance Act (of S. 932 / H.R. 1262) got hung up in Affordable Care Act subsidy negotiations in the Senate.

Amongst other things, the bill included reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) program. The PRV is a critical tool in rare disease therapy development, rewarding companies who have a rare disease therapy approved with a transferrable “skip the line” voucher that can be used or resold to recoup some of their investment.

The authorization for the PRV program expired in December 2024.

“The PRV is a critical tool in incentivizing investment in potential mitochondrial disease therapies and will be a major focus in 2026,” said UMDF President and CEO Kristen Clifford.

UMDF Launches New Medications, Insurance Assistance Pages

As new FDA-approved treatments – including Forzinity for Barth Syndrome and Kygevvi for TK2d – get approved for forms of mitochondrial disease, UMDF is expanding support efforts into therapy education and access.

Amongst the three new pages found on umdf.org:
- FAQs page for Forzinity
- FAQs page for Kygevvi
- Insurance Assistance Page

MELAS EL-PFDD Registration Now Open

UMDF is proud to join MitoAction, International Mito Patients, and the Muscular Dystrophy Association to co-host the MELAS Externally Led Patient Focused Drug Development (EL-PFDD) meeting on February 10, 2026.

This virtual event is open to all members of the mitochondrial disease community, including patients, caregivers, clinicians, researchers, and industry partners.  Click here to register.

EL-PFDD meetings like this are FDA-recognized forums that bring patients and caregivers together to share lived experiences and treatment priorities, ensuring their voices inform drug development.

Clinical Research Pavilion to Return for MitoMed 2026

Patients, caregivers, and healthy controls will once again have the opportunity to participate in research at UMDF’s Clinical Research Pavilion at Mitochondrial Medicine Conference this year, June 17-20, 2026, in Orlando, FL. 

While the full lineup of studies is still under development, here’s an early look:

• Motor Skills Assessment with The Children’s Hospital of Philadelphia
  • This study is open to patients and caregivers. If you participated last year, you are encouraged to participate again this year.
• MSeqDR (Mitochondrial Disease Sequence Data Resource) Enrollment
  • Learn more on how you can share your genomic data with researchers all over the world. If you are NOT attending the conference, and are interested in this opportunity, please email registry@umdf.org or reach out to CHOP at MSeqDR@chop.edu.

Please reach out to registry@umdf.org to learn more about the studies and to hold your spot for 2026. Learn more at www.umdfconference.org. 

Mitochondrial Disorder Nutrition Survey

Your experience matters. UMDF invites all individuals affected by mitochondrial disease and their caregivers to participate in a brief, anonymous survey focused on nutrition. Your insights will help us better understand nutritional needs and inform companies interested in developing meaningful mitochondrial nutrition solutions. Together, we can help shape the future of care. You can share your experience here.

MitoWorld’s #BeyondTheDisease

Each month, UMDF partners with MitoWorld for #BeyondTheDisease, a feature highlighting advances in mitochondrial science and the people responsible for them. This month, read about MitoWorld's 2025 in review, Multifaceted Mitochondria Symposium, Mitochondrial Stress, Brain Imaging, and Epigenetics (MiSBIE study), and features on "Mitochondrial Transfer Leads to Immune Evasion by Cancers" and "Mitochondria Transfer from Cancer Cells to Fibroblasts.” Read more at mitoworld.org/mitomedia/beyond-the-disease/.