UMDF’s Mission to Support the Mito Disease Community

Category: Advocacy
By: Brian Harman Date: November 25, 2019

The mito community is a tight-knit group that is driven by connections. While it’s challenging to live with a disease that currently has no FDA-approved treatment options available, the mindset is always “what’s next?” As someone who is relatively new to the community but has years of experience in patient advocacy and donor development, I find this attitude incredibly impressive and it continues to inspire my work as the CEO of the community’s largest patient advocacy organization, UMDF.

While families, patients and caregivers affected by mitochondrial disease did not choose this life, they do choose to advocate for the best care possible. Their relentless spirit continues to inspire our work at UMDF – they are true mito warriors and are always willing to step up and make a difference.

The United Mitochondrial Disease Foundation (UMDF)

We, at UMDF, know that we have to move as fast as we can. Although it will never be fast enough for a sick child, or an affected adult whose life has been changed, or a caregiver, if we don’t go fast, who will?

Our mission is to promote research and education for the diagnosis, treatment of mitochondrial disorders, and to provide support to affected individuals and families.

What does this mean? We help aggregate and amplify the patient voice as every journey is different and needs to be heard. We advocate for the patient families we serve and make connections easier for them. We also serve as a convener for the community – bringing together families, healthcare providers, researchers and the general public.

Supporting the Mito Community

Through a variety of efforts, we support the mito community both directly and indirectly. For example:

  • Scientific Research:
    • We are committed to our patients and families by funding the best and brightest researchers, and unlocking more dollars to move science faster.
  • Disease Education
    • Our annual Mitochondrial Medicine Symposium provides opportunities to learn from the leading researchers in mitochondrial disease while meeting others who are facing similar challenges.
    • Our local chapters frequently host events to help build local support groups and raise awareness throughout the country.
  • Advocacy
    • We advocate on Capitol Hill on a number of initiatives surrounding insurance and testing, medical nutrition and appropriations funding.
    • We partner with families, patients and caregivers to share their stories on Capitol Hill.
  • Support
    • Through our support line and resources, we provide direct support to families.
  • Collaboration
    • We work together with other advocacy groups like MitoAction, the Muscular Dystrophy Association and People Against Leigh Syndrome (PALS) to make a bigger impact.


If you or your loved one has been recently diagnosed, find a way to connect and get involved.

Written By Brian Harman

Learn More About The Charge

Advice for Families Affected by Mitochondrial Disease

The Charge sat down with patients, caregivers and advocates for their first-hand experience of what life with mitochondrial disease is like. In this video, these mito warriors share advice for newly diagnosed patients and families. A mitochondrial disease diagnosis may make you feel alone and overwhelmed. You may be unsure about your next steps or have trouble coping with the plethora of new information.

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