The CNF Advocacy Award of Merit
was created in 2002 through the efforts of its Board of Directors
and the Foundation’s Advocacy Committee. The award recognizes
a patient support organization making outstanding achievements
on behalf of patients and families with neurologic and developmental
disorders. Eligible patient support organizations must be
a not-for-profit organization. Submitted nominations will
be reviewed by the membership of the Advocacy Committee of
the Child Neurology Foundation. Three finalists will be selected
from the group of candidates and will be forwarded to the
CNF’s Board of Directors for final consideration.
2007
CNF Advocacy Award of Merit Recipient
The United Mitochondrial Disease Foundation (UMDF)
The United Mitochondrial Disease Foundation (UMDF) was created in 1996 to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families. The national headquarters of the UMDF is in Pittsburgh, Pa., and the organization currently has 15 chapters, 16 Mito GroupsSM and more than 30 Mito AmbassadorsSM across the United States and Canada. The UMDF offers support to all sufferers of mitochondrial disorders regardless of diagnosis or age.
Mitochondrial disease – the body’s inability to turn food into the energy to sustain life – is caused by the failure of the cellular powerhouses called mitochondria, which supply 90 percent of the body's energy needs. It is estimated that every fifteen minutes, a child is born who will develop a mitochondrial disease by age 10, and for many children, the disease can be fatal. Mitochondrial disease can present with a wide range of health issues such as a weak heart, failing kidneys, seizures, and/or respiratory complications. It can affect any organ, appear as any disease and occur at any age. Many experts refer to the disease as a "notorious masquerader" because it wears the mask of any number of illnesses. The UMDF seeks to unmask this perpetrator and help families reach an earlier diagnosis which can help in treatment.
In order to broaden the knowledge base on mitochondrial diseases (which will also aid in earlier diagnosis for patients), the Foundation recently started a physician outreach program through grand rounds. The primary purpose of the grand rounds is to provide continuing education to health care providers on topics specific to mitochondrial disorders. The grand rounds are also coupled with a special family meeting to help educate patients/families about mitochondrial disease – and many times, the family meetings are suitable for outreach to nurses, therapists, educators, and various allied health professionals.
Because new, aggressive research for rare disorders is often not underwritten by federal grants, the UMDF is committed to funding such grants and others that will forward research into mitochondrial diseases. The organization is one of the leading contributors of grants to mitochondrial disease researchers and is considered the premier foundation for mitochondrial diseases by the world medical community. UMDF's scientific and medical advisory board, composed of mitochondrial disease experts from around the world, approves which research grants receive funding. In 2007, UMDF funded more than $1 million in research, and the Foundation has made a commitment to raise more than $15 million for research by 2009.
Since 1996, the United Mitochondrial Disease Foundation has sponsored an annual multidisciplinary conference, considered to be the leading seminar for mitochondrial medicine and research. This conference brings together clinical and basic science researchers sharing an interest in mitochondria as well as patients and families living with mitochondrial disease. More than 500 families, physicians, researchers and allied health professionals attend UMDF’s annual conference.
According to Dr. Susanne Arnold of Germany, "This 'bench to bed' strategy creates an atmosphere that is very challenging and motivating, simply because we (the researchers) can get an impression of where our scientific work goes and how it can be helpful. What could be a better motivation if the sometimes really basic research we are doing can successfully help save or even cure a patient?"
The United Mitochondrial Disease Foundation (UMDF) was created in 1996 to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families. The national headquarters of the UMDF is in Pittsburgh, Pa., and the organization currently has 15 chapters, 16 Mito GroupsSM and more than 30 Mito AmbassadorsSM across the United States and Canada. The UMDF offers support to all sufferers of mitochondrial disorders regardless of diagnosis or age. 
