Mitochondrial Disease Awareness Week

Posted on: September 17th, 2013 by jeni No Comments

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Mitochondrial Disease Awareness Week

September 15-21, 2013

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(Click on image to enlarge)

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Did you know…

  • Mitochondrial disease can affect any body organ or system, and any person at any age?
  • Mitochondria are in almost every cell of the body, and are responsible for creating more than 90 percent of our body’s energy?
  • Mitochondria are necessary for supporting growth sustaining life?
  • Mitochondrial disease is variable, and impacts thousands and thousands of people?
  • There are no known cures for mitochondrial diseases, and most of them are progressive?

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Understanding the variations…

  • Thousands and thousands of children and adults are diagnosed with variations of mitochondrial disease each year — yet many children and adults will live with disabilities or die before their mitochondrial condition is identified or labeled.
  • Mitochondrial disease is poorly understood, often a missed or post-mortem diagnosis, and can look different from person to person — even within a family.
  • Mitochondrial disease can be associated with poor growth, muscle weakness or ataxia, neurological problems, vision and/or hearing problems, diabetes, autism, immune deficiency, autonomic dysfunction, and problems with various organs and body systems including heart, liver, kidney, GI tract, and thyroid.
  • Katie, Stevie, Jamie, and Mattie Stepanek, and their mom, Jeni Stepanek, are the only known people in the world with the exact mutation of mitochondrial disease that has been so devastating to their family.
  • It is the variation of mitochondrial diseases that makes them so challenging to identify, to understand, to treat, to predict outcomes, and to find a cure.

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Mattie J.T. Stepanek…

  • Was diagnosed with a rare mutation of a mitochondrial disease now labeled Dysautonomic Mitochondrial Myopathy.
  • He died just before his 14th birthday from complications of the condition.
  • His sister and two brothers died during early childhood from the same condition.
  • His mother was the first one diagnosed with the condition, but that was only after all four children were born.
  • Despite a brief life, Mattie lived a full life. He penned seven NY Times Bestsellers — six collections of “Heartsongs” poetry and one collection of “Just Peace essays, and inspired millions with a message of hope and peace, and purpose.

Who is working towards education and a cure…

  • www.MDA.org — Mitochondrial Myopathies are one of the 43 categories of neuromuscular disease addressed by the Muscular Dystrophy Association. Mattie J.T. Stepanek became well-known as an advocate and messenger of hope and peace, and served three years as the National Goodwill Ambassador for MDA, helping to raise awareness of this category of diseases.
  • The MDA Mattie Fund – After his death in 2004, MDA created the MDA Mattie Fund, which supports both the MDA Summer Camp program that Mattie loved to attend and also research in childhood neuromuscular diseases, like the one that took the lives of Mattie and his siblings. Two fellowships in Mattie’s name, specifically for mitochondrial research, have also been created with these funds.
  • www.MitoAction.org — MitoAction’s mission is to improve quality of life for those affected by mitochondrial disease, as well as raise awareness of the conditions, to connect families and professionals dealing with mitochondrial diseases, and create tools to empower families and caregivers.
  • www.UMDF.org – The misson of the United Mitochondrial Disease Foundation is to promote research and education for the diagnosis, treatment, and cure of mitochondrial disorders and to provide support to affected individuals and families.
  • The thousands and thousands of families impacted by the devastation of mitochondrial diseases.

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What can you do?

  • Visit any of the websites listed in this post to learn more about mitochondrial diseases.
  • Make a donation to any of the organizations listed in this post to support the education and research efforts.
  • Read a book, or a poem, by Mattie J.T. Stepanek — a child who knew his life would end too soon due to mitochondrial disease, yet a person who chose to live with purpose, and leave us with a message of hope and peace. (Mattie’s books are available in our Peace Shop).
  • Share information on your social media pages about Mitochondrial Disease Awareness Week.
  • Say a prayer — for all those have been, and are, and will be affected by mitochondrial diseases.

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 October 6, 2013 — Free Event

Bethesda, Maryland

Sponsored by www.MitoAction.org

Please register here

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Click here to view the music video:

He Was Just Like Me — A Tribute to Mattie J.T. Stepanek

Music and lyrics by Christopher Cross

Sung by Madison Cross

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A note from Mattie’s mom…

Mattie J.T. Stepanek, the late teen poet and peace activist, envisioned a world at peace. He believed that people are good and generous, and that life is sacred and worthy of celebration. He gently reminded people about choosing attitudes and habits that create a peace­ful reality. He fervently advocated for the powerful impact of sharing resources – time, energy, dollars, talent, and other gifts – that nurture hope. And he exem­plified his personal philosophy – “Always remember to play after every storm!” – through his cheerful optimism as he coped with the many challenges of his own life, filled with disability and death, and a desire for peace.

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Disability awareness may not seem like a “fit” that promotes Mattie’s desire for peace — but Mattie recognized that peace was truly a multifaceted concept. Mattie knew that peace grows from collaborative problem-solving and nonviolent conflict resolution, and he under­stood that peace also grows from being content and happy with who we are as individuals. Both of these essential aspects of peace are rooted in people having their basic needs met, and their rights re­spected. Like food and water, and like access to education and healthcare, hope and purpose are basic needs. Hope can support us in not only surviving, but also thriving — even with a disability, and despite length of living.

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Mattie loved being “a part of the effort” with MDA, serving as an ambassador of goodwill — of  hope and peace — during his journey through life. Sadly, Mattie is not here in person as we continue to raise awareness, and promote education, and fund research towards cures for life-threatening disabilities. Mattie knew though, even challenged us to recognize, that his advocacy work for hope and peace was not really about him. During his final speech, which was at the 2004 MDA Heartsongs Gala, Mattie reminded us that he was merely a mes­senger, and “those who generously give of their resources… you are the champions” of hope and peace, and of all that Mattie J.T. Stepanek believed in for our world.

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I am blessed and grateful that so many people have accepted my son’s challenge to continue making a difference beyond his lifespan. Mattie’s spirit lives, and we can all rejoice in the reality that his messages of hope, of commitment, of advocacy, of purpose, of Heartsongs, of goodness — continue to travel around the world and teach peace, through each of us.

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Peace,

Jeni Stepanek, Ph.D.

(“Katie’s, Stevie’s, Jamie’s, and Mattie’s mom”).

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Click here to watch Mattie’s
“I Could… If They Would” poem

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Click on image to enlarge

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