Archive for January, 2010

Purpose
January 25, 2010

        Hutchinson-Gilford Progeria Syndrome, or Progeria, is a rare, genetic condition that appears in children as the effects of accelerated aging. Progeria is caused by a mutation of the gene LMNA.  Prior to April, 2003, the cause of Progeria was unknown. Children with Progeria die at an average age of thirteen to heart disease.  Progeria was first described in the late 1800’s by Dr. Jonathan Hutchinson and Dr. Hastings Gilford.

       A cure for any ailment can only come about through extensive efforts and studies.  Funding for these studies is extremely costly.  For this reason, education is key to finding a cure for these children.  A cure for Progeria will likely also help millions of adults who suffer from heart disease and stroke as part of a natural aging process. 

       The Progeria Research Foundation is located in Peabody, MA.  They have now located 54 children in 30 countries living with Progeria.   However, researchers believe there are statistically another 150 children living undiagnosed, or not identified by the Foundation, with Progeria in the world.  I have seen their volunteers work first hand at raising money and spending their time working to raise money to cure Progeria. 

 

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Inspiration
January 25, 2010

       I was introduced to the Progeria Research Foundation when I was in middle school.  The foundation had an office next to my dad’s where I would sometimes go after school. 

       One of my first memorable volunteering experiences was for the Progeria Research Foundation.  I spent a day of my break with two friends stuffing hundreds of envelopes.  I felt very accomplished after this experience and continued to volunteer at different events sponsored by the foundation.  My two friends and I even appeared in PRF’s newsletter in a picture taken from that day of volunteering.  PRF holds a bi-annual benefit for research that I have also volunteered for.

       Since the foundation is located in my hometown, it has been difficult to volunteer since I’m living at school in Connecticut.  However, I still try to educate others about Progeria when I get the chance. 

       TLC recently aired “6 Going on 60” which documented the lives of two girls, Kaylee and Lindsay, living with Progeria.  The moving documentary displayed the struggles and triumphs of their parents and families as their daughters try to live normal lives.  I watched with several of my roommates. They were moved and curious to find out what I knew about Progeria.  This made me realize that I can do my part to educate others and spread awareness for Progeria.