GENERAL

3/30/2009 08:40

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As a young child my mom did her best to shield me from cartoons (which eventually became a futile attempt), and steer me towards educational program such as Sesame Street and Mr. Rogers. However, at a certain point in the morning, the educational programs were over and a show about medical operations would come on.
Now when you are 5 or younger, and you see an open-heart surgery or a liver transplant, it defies everything you understand – at least that is how I felt. My perception as a child was if someone was cut open like that they should have died. However, I was completely fascinated by the fact that they not only survived the operation, but looked healthier and happier afterwards.
How was it possible - I had to know how a person could be cut open to that degree and survive. I wanted to know every detail about the human body and the more I learned, the more I realized how little I knew….and thus my fascination with the human body was born.
Learning about the body through the years has only solidified my conviction that it is simply amazing – a work of art with a level of complexity that rivals nothing else, and yet it runs so smoothly...at least in most cases. Some of us are born with genetic differences that leave us predisposed to certain diseases, many of which are rare diseases.
However, genetics cannot take the full blame. There are also many environmental factors that can play a role in the development of a rare disease. However, unlike the more prevalent diseases like high cholesterol, high blood pressure, or diabetes, rare diseases lack the research funding needed to understand the cause of the disease. Without understanding the root cause of a rare disease it is much difficult to find a cure.
One of the largest groups of people that are affected by rare diseases is children. And that brings me to my picture. For me, the child is placing its hand in the hand of an older generation, symbolizing that children are letting us know that their future health and the health of children to come rest in our hands. It also reminds me of my childhood and the respect and appreciation for the human body that was born at an early age and has grown each year during my life.
So my iWish is that the world will gain a greater interest and passion for the human body and realize that we need to increase funding for research with rare, orphan and neglected diseases so as to intensify our global research efforts. Doing research with rare diseases has helped researchers uncover many stones and hidden closets that have led to amazing medical advances and cures. Often this knowledge has proven not only important for a rare disease, but also for more common diseases that affect the masses, because rare diseases often force the research community to thoroughly examine genes, pathways and processes in the body that previously were not completely understood.
By Robert Derham, co-founder of CheckOrphan

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