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2005- 2015: Decade of Difference

We are getting closer every day to more effective treatments for mitochondrial disease. UMDF is the group that can bring scientists and clinicians together so that we minimize duplication of effort, spark ideas, and keep everyone out of their silos and into a productive flow of communication. That is what is critical moving forward. That is what will get us to new treatments. And none of it can be done without your help.

Over the years, we have worked tirelessly to make strides to help find treatments – and ultimately a cure – for mitochondrial disease.  One of the best ways to show you how far we have progressed is through our “decade of difference.” For example:

  • In 2005, our cumulative dollars spent on mitochondrial research had not yet reached a million. Today, UMDF has contributed over $13,000,000 leading to new clinical trials and potential treatments.
  • In 2005, there were three clinical trials related to mitochondrial disorders. Today, there are more than 300 mitochondrial-related clinical trials ongoing.
  • In 2005, researchers were just beginning to understand the link between mitochondrial dysfunction and other more common diseases. Today, a clear link has been established between dysfunctional mitochondria and Alzheimer’s, Parkinson’s, diabetes, certain cancers, and even the aging process itself.
  • In 2005, UMDF had six chapters and 20 support groups. Today, UMDF has representation in every state and in 152 countries.
  • In 2005, only two members of Congress knew about mitochondrial disease. Today, more than 350 members of the House and Senate have been informed. When they make decisions about how to spend significant federal money on health-related issues, mitochondrial disease will be on their minds.
  • In 2005, we had no Congressional Mitochondrial Disease Caucus. Today, UMDF created a caucus with 20 Members of Congress involved.
  • In 2005, 124 people attended the UMDF symposium, with three people from other nations. Today, more than 500 people attend from around the globe.
  • In 2005, there was little connection between patients and the medical community.  Today, UMDF brings them together with four annual regional conferences.
  • In 2005, gene sequencing was just a dream. Today, gene sequencing is a reality, identifying areas where mutations occur and targeting potential treatments.
  • In 2005, 36 researchers applied to UMDF with research proposals. Today, upwards of 211 apply.
  • In 2005, there were no UMDF “Grand Rounds” (programs where mitochondrial specialists travel to different hospitals to brief medical personnel on mitochondrial disease). Today, over 100 grand rounds have taken place, serving approximately 50 people each time, leading to 5,000 medical professionals being informed about the diagnosis and treatment of mitochondrial disorders.
  • In 2005, there were 25 identified “mito docs” in existence.  Today, there are several hundred identified worldwide.
  • In 2005, there wasn't a way to track patients.  Today, UMDF has created the Mitochondrial Disease Community Registry for patients.