Energy for Action the Theme as Mitochondrial Disease Awareness Week Begins

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UMDF Members raise awareness for disease with events around the nation including a Congressional Briefing.

We all have mitochondria. They are the powerhouse of our cells. Our mitochondria provide the energy to help us walk, talk, hear, see, and breathe. Mitochondrial disease occurs when these tiny power plants fail, shutting down the body’s ability to sustain life and support growth on a cellular level. Every 30 minutes, a child is born with mitochondrial disease. Those developing the illness in adulthood see their vibrant lifestyles change to multiple disabilities.

In order to raise awareness for mitochondrial disease, thousands of members of the United Mitochondrial Disease Foundation (UMDF) will fan out across the nation September 15-21, 2013 for ‘Mitochondrial Disease Awareness Week’. They will promote education, information, and participate in advocacy. The theme of UMDF Mitochondrial Disease Awareness Week is “Energy for Action.”

There are compelling reasons why those who do not suffer mitochondrial disease should be concerned. Research proves that dysfunction in our mitochondria is linked to many well-known illnesses like Parkinson’s, Alzheimer’s, diabetes, some cancers, and autism spectrum disorders. Scientists believe that if they can solve the mysteries surrounding mitochondrial disease, they may be able to develop treatments, therapies and potential cures for the myriad of diseases that stem from the normal aging process. “Awareness week is critical to our success”, said Charles A. Mohan, Jr., CEO/Executive Director of the UMDF. “Awareness will help people understand that this disease does not just impact a small population, but it has a direct impact on you, your aging parents, and everyone we love in some way or another.”

Among the activities for ‘Awareness Week’ is a briefing before the Congressional Mitochondrial Disease Caucus on September 19, 2013. The caucus, formed by Rep. Anna G. Eshoo (D-CA-18) and Rep. Tim Murphy (R-PA-18), is responsible for educating other members of congress about mitochondrial disease and the implication mitochondrial dysfunction has on human health. The topic for the briefing is “Targeting the Mitochondria: Potential Treatments and Therapies That Could Benefit All.”

Among those speaking at the briefing is Art A. Estopinan. Mr. Estopinan, Chief of Staff for Rep. Ileana Ros-Lehtinen (R-FL-27), will share his story about his two and a half year old son, Arturo. When Mr. Estopinan and his wife, Olga, took their son home after his birth, the child appeared to be developing normally. After his first birthday, Arturo began to show muscle weakness. Very soon after, he lost all of his motor skills and began losing weight. Arturo was diagnosed with a form of mitochondrial disease called TK2. Because he lacks the enzyme needed to develop the mitochondria in his little body, Arturo is unable to move his fingers and toes and cannot breathe on his own.

There is no cure for mitochondrial disease, but there is hope. At the UMDF Annual meeting in June at Newport Beach, CA., more than 22 potential treatments and therapies in the pipeline were outlined by leading researchers, a few of whom will be speaking at the briefing on Capitol Hill. UMDF remains committed to raising awareness and dollars to fund this promising research. To date, the UMDF, through fundraising by its members, has funded more than $11 million in grants that we hope will lead us to a cure.

The Congressional Mitochondrial Disease Caucus Briefing is scheduled for Thursday, September 19, 2013, at 11:00AM in Cannon House Office Building, Room 122.

For more information about the UMDF and mitochondrial disease, visit

Founded in 1996, the United Mitochondrial Disease Foundation (UMDF) works to promote research and education for the diagnosis, treatment and cure of mitochondrial disease and to provide support for affected individuals and families. Since its inception, the UMDF has funded nearly $11 million in research, making it the leading non-governmental contributor of grants focused solely on mitochondrial disease. The UMDF, based in Pittsburgh, PA, is a national organization represented globally by thousands of members and their families.

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