Dr. Oz Show Monday March 8, 2010
March 16, 2010

Photo Courtesy DoctorOz.com
Photo Courtesy of ToledoFreePress.com

 

     Kaylee Halko and her parents, Tim and Marla appeared on the Dr. Oz show Monday. Staffers had contacted them after viewing the TLC documentary “6 Going On 60” that Kaylee appeared in.

     Progeria Research Foundation Medical Director Leslie Gordon and University of Michigan’s Dr. Jeffrey Innis joined the Halkos on the show.  Dr. Innis originally diagnosed Kaylee in 2004 and practices at University of Michigan C.S. Mott Children’s Hospital.

    Audrey Gordon told the Toledo Free Press that they were thrilled the medical show was interested in Progeria and raising awareness for the rare condition.

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Rare Disease Day 2010
March 3, 2010

Sunday February 28, 2010 was World Rare Disease Day.  The purpose of the day was to spread the word about the need to research rare diseases.  The National Organization for Rare Disorders headed the third annual event.  NORD’s mission is to identify, treat and cure rare diseases through various programs.

Information about rare diseases is limited; making diagnoses difficult and families often face a lack of research or resources.   Rare diseases often have no cures.  However, there are between 6 and 8 thousand known rare diseases with 75% of these affecting children (rarediseaseday.org).

Congress passed the Orphan Drug Act of 1983 to encourage the development of drugs for rare diseases.  A rare disease is one that affects fewer than 200,000 people in the United States.  Prior to the passage of this Act, private industries were hesitant to invest in treatments because the drugs were expected to be unprofitable.  To find out more about the benefits of this Act you can visit the review by the Department of Health and Human Services.

Finding a treatment or cure for rare diseases often leads to advances in more common diseases and disorders.  Dr. Leslie Gordon, Medical Director for the Progeria Research Foundation said, “Helping children with Progeria, with this rare and fatal disease, also helps us understand the biology of aging in all of us” (Findtheother150.org).

On Rare Disease Day 2010, Boston Children’s Hospital hung a sixty foot chain with the names of 350 rare diseases. Audrey Gordon, President and Executive Director of the Progeria Research Foundation explains why rare disease studies are so important: