30 Years of Progress Fueled By You

Three decades ago, the world looked very different for mitochondrial disease patients and their families. Little was known about the disease, there was no research happening, and for patients, hope was limited. But that changed when UMDF’s founder, Chuck Mohan, heard the words that no parent should ever hear – “There’s nothing we can do.”

Despite doctor’s telling Chuck there was nothing they could do for his daughter Gina, he refused to give up hope. His determination led to the founding of UMDF, and now, 30 years later, hope has been found in the form of two FDA-approved therapies, a robust organization dedicated to providing education, awareness, and resources for the mito community, and a bold vision for the future: a world free from the challenges of mitochondrial disease.

As we reflect on how far we’ve come as an organization, we’re thankful to Chuck and his vision. But there’s still more work to be done. This spring, we are launching an exciting spring appeal to highlight our accomplishments and where we will head next. These achievements would not be possible without your continued support, so we hope you will help us power the next chapter of discovery by making a gift this spring.

Watch your email — and mailbox — this month as we explore UMDF’s 30 years of service to the mitochondrial disease community. Don’t want to wait? Make a donation now at umdf.org.

UMDF’s Next Chapter Begins

We’re excited to introduce our new FY 2027-2029 strategic plan to the UMDF community, a forward-looking roadmap that expanded on our current momentum over the last 30 years. Thanks to the more than 200 patients, families, clinicians, researchers, and partner organizations, along with UMDF staff and board members, we developed a plan that was built by the community, for the community.

Over the next few years, we’ll focus on four strategic pillars – funding, collaboration, diagnosis and access, and awareness.

While we may have big goals for the future, our commitment to the mitochondrial disease community remains the same. As we embark on this next era of growth, your support is critical. Together, we can accelerate breakthroughs and bring hope to every person affected by mitochondrial disease.

To learn more, read the full strategic plan here.

A Year of Growth and Impact

​​​We’re proud to share our latest annual report and the impact we’ve made together over the past year. From breakthroughs in treatments with the FDA-approval of two new drugs for mitochondrial disease patients to advocacy and awareness initiatives that saw UMDF staff on Capitol Hill, 2025 was a year of significant milestones.

As we embark on our 30th year of serving the mitochondrial disease community, this report highlights the progress, partnerships, and people that continue to move our mission forward. We’re hopeful that, together, our continued momentum will translate into better outcomes for mito patients and their families.

Click here to read our annual report.

UMDF Welcomes New Board Members

We’re pleased to announce that our Board of Trustees has welcomed four new members – Raeka Aiyar, PhD, Michael Daly, Timothy Jalbert, CPA, and Heather Schichtel. As we continue to build on our momentum, each of these leaders brings unique expertise and a deep commitment to the UMDF mission and the community we serve. With their guidance, we look forward to the ideas, leadership, and energy they’ll contribute to supporting the mitochondrial disease community. Read more about our new board members here.

The Countdown to Mito Med in Orlando, FL is ON

We’re just a couple of months away from our biggest conference for mitochondrial disease patients, families, and members of the science and medical community taking place in Orlando, FL from June 17-20.
​​​​​
Whether you’ve attended our Mitochondrial Medicine Conference every year or this is your first time, there is something for everyone. Programming for MitoMed is live. Check out our Patient and Family Program here and our Scientific and Clinical Program here. This year’s conference will offer sessions for teens, a clinical trials update, a networking session for patients and caregivers, a special seminar on Living with Leigh Syndrome, and so much more.

Register here to join us at conference and book your room here.

What’s Happening at the Clinical Research Pavilion 

Patients, caregivers, and healthy controls will once again have the opportunity to participate in research at UMDF’s Clinical Research Pavilion at the Mitochondrial Medicine Conference this year, June 17-20, 2026, in Orlando, FL. This year, the lineup will include the mitoSHARE Patient Registry, the mitoSHARE Biorepository, a Motor Skills Assessment with The Children’s Hospital of Philadelphia, pGz modified Jogging Device Study with The Children’s Hospital of Philadelphia, and MSeqDR (Mitochondrial Disease Sequence Data Resource) Enrollment. More opportunities will be available and will be posted here.

To kickstart your pavilion inclusion, join mitoSHARE today. Please reach out to registry@umdf.org to learn more about the studies, and to hold your spot for 2026.

Mark Your Calendar for the Next Ask the Mito Doc Webinar

If you’re looking to learn more about genetics, our next Ask the Mito Doc webinar on Wednesday, April 15 at 7 pm EST is for you.

Alongside UMDF staff, we’ll be joined by Fernando Scaglia, MD from Baylor College of Medicine in Houston, TX for a virtual discussion on Genetics 101. Click here to register and click here to submit your questions for Dr. Scaglia.

If you missed last month’s Ask the Mito Doc webinar with Sarah Chang, PhD, Medical Strategy Lead at UCB on the TK2d therapy, Kygevvi, watch the replay here.

An Update on DCA

Saol Therapeutics said they’re “encouraged” by FDA conversations on dichloroacetate following a Type C meeting with the agency on March 26.

In a letter to the PDCD community, Dave Penake, Saol Therapeutics CEO said: “The Agency provided guidance on the content and focus of the resubmission, helping to further clarify a feasible path forward. Importantly, no additional meetings were requested at this time, allowing us to move ahead with preparing our resubmission.”

He added “While work remains, we view this as meaningful progress and a step forward that reflects not only the data but the strength and unmet needs of this community. We are moving forward with urgency and remain focused on bringing this therapy to individuals with PDCD as quickly as possible. As we continue this process, we will keep advocating for regulatory flexibility and speed.”

You can read the full letter here.

Be the Energy for the Mito Community at our St. Louis Walk

Get ready to walk with UMDF at our Energy for Life Walk in St. Louis on Saturday, May 16 at 9 AM CST! Be the energy with every step you take to support mitochondrial disease patients and the families who depend on research to find a cure. Whether you register as an individual or join a team, your participation promotes research, education, and support for the mitochondrial disease community. Honor your loved one(s), sponsor, participate, volunteer and more!

Click here to register for the St. Louis Walk at Tilles Park, Gloria Rodgers Shelter located at 9551 Litzsinger Rd. Not in St. Louis? Find an upcoming walk in a city near you or participate virtually here. ​​​​​​

Nominate a UMDF Volunteer Who’s Making A Difference

Do you know someone who is making a difference in the mitochondrial disease community? In honor of April being National Volunteer Month, there’s no better time to nominate a UMDF volunteer for one of our 2026 Volunteer Awards. Click here to make a nomination for the Energy Award, Heartstrings Award, or Leap Award by April 15.