UMDF Mission 2018-02-12T16:39:16+00:00

Our Mission in Action

To promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.

Patient and Family Support

Patients and families are our focus!

When a patient or parent first hears the phrase ‘I suspect mitochondrial disease’, UMDF is usually the next call they make or their first website visit.

In fact, on a yearly basis, UMDF answers and helps more than 4,000 people navigate their mitochondrial journey with phone support.   Emails seeking support and resources are countless.

Bottom line – UMDF is ready to help.

UMDF supports newly diagnosed patients with critical information on treatment and care.

Our vast online viewing library provides countless topics on living with mitochondrial disease.

When a patient or family member calls or emails the UMDF, we try to answer questions quickly.
If there is a question we are unable to answer, we’ll help you get the information you need.

If your doctor needs information, we will point him or her to an expert in the mitochondrial medicine field for answers.

And of course, we are here to listen in difficult times.

UMDF connects patients to each other.    UMDF Ambassadors across the nation provide patients and families with support in their state or region.
We also connect at UMDF Family Support Meetings and our National Symposium.  This symposium is the only mitochondrial medicine meeting where patients, clinicians and scientists are able to network and interact.

We are building the ‘Roadmap to a Cure’  for the entire community— but we need the help of all patients, families, and cargivers to have an impact on treatments and cures.

How can UMDF help and support you today?
Connect now or call us at 888-317-UMDF (8633) today.   Stay in touch with the latest information and newsletters.

We are here to serve the entire patient community now!

Scientific Research  & Clinician Education

Scientific Research
Since UMDF’s start in 1996, nearly $12 million in grants have been awarded to support the research that scientists believe could lead to a faster and painless diagnosis,  treatments and potential cures for mitochondrial disease.

Our community ‘Roadmap to a Cure’ is our focus for the years ahead.

We invite you to click here to view our research progress from 1996 through today.

Clinician/Scientific Education

“There are not enough doctors who know about mitochondrial disease”.  It’s a common phrase we hear too frequently.

UMDF works to educate clinicians and allied health members about mitochondrial disease and its impact on other diseases and human health.

We do this through our educational sessions at leading medical meetings, and on the grassroots level.
UMDF’s Symposium devotes time to a multi-day platform for the scientific and medical community so that they may learn about the disease and how to help patients.

For patients, UMDF is spearheading an effort to collaborate on the next generation of treatments for patients through the development of a Mito Care Network.

In addition to funding research, UMDF offers scientists an important overview of mitochondrial disease and the latest discoveries and information oin our website.

None of this would be possible without the generous donations from patients and families, or funds raised  through participation in Energy for Life Walks, Family Research Funds, and other outstanding events.

Creating Awareness

It is the job of our entire community to raise the level of awareness when it comes to mitochondrial disease.

UMDF actively works to raise the profile of mitochondrial disease and dysfunction through traditional and social media.   Story placement in print and broadcast media last year alone resulted in over 500 stories in which UMDF, its patients and families, scientists, and clinicans were mentioned.
This resulted in nearly 400,000 new visits to the UMDF website where the number one page viewed was “What is Mitochondrial Disease”.  

Through your state and federal advocacy efforts, mitochondrial disease and UMDF is a recognized partner on Capitol Hill.

But more needs to be done.   You can help by joining us in active participation during ‘Awareness Week’.   You can help us get media coverage to spread awareness.   We must continually raise our profile so the phrase “Mito What?” becomes a phrase of the past.

State and Federal Advocacy

We’ve made tremendous progress in educating the federal government about mitochondrial disease.

More than a decade ago, UMDF asked the government to report the amount of dollars it was investing in mitochondrial medicine research.   Sadly, that dollar amount was far too low.

Since that time, we’ve introduced legislation, completed four ‘Day’s on the Hill’ and now have the attention of the National Institutes of Health (NIH).

Because of the hard work by our patients and families, UMDF was able to secure appropriations language in the Department of Defense budget, allocating more than $11 million dollars in scientific research towards treatments and cures!

But, our community needs to continue this work by participating in advocacy, supporting the UMDF created Congressional Mitochondrial Disease Caucus ,and by working on the statewide level to address the needs of our entire mitochondrial disease community.