Dandy-Walker Congressional Testimony
- added December 22, 2007
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- coleman1324
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My two-year-old son Ryan was born missing the back part of his brain. While that was understandably a shock it was just as alarming to learn that no national organization existed to advocate for individuals with this birth defect called Dandy-Walker Syndrome. But the story does not end there.
Instead of passive acceptance of the diagnosis our family was facing we chose to embrace the experience and saw an opportunity to fill a worldwide void in Dandy-Walker advocacy. Almost overnight we arrived at the understanding that it was our purpose to advocate for individuals like Ryan who could not advocate for themselves. Whether by divine arrangement, destiny or fate we became accidental advocates.
In calendar year 2007 we formed the only national non-profit for Dandy-Walker Syndrome called the Dandy-Walker Alliance (www.dandy-walker.org), testified before Congress, worked with a film producer on a documentary that will debut in January 2008, were successful in getting congressional legislation introduced, were profiled on a local television station, appeared in numerous newspaper articles and congressional press releases and was even honored by being the subject of a speech delivered on the floor of the U.S. House of Representatives. However, the best part by far is the daily opportunity to serve individuals worldwide to provide educational materials and serve to raise the profile of Dandy-Walker Syndrome.
The journey was not always easy. Along the way Ryan would endure two brain surgeries and suffer from up to eight seizures a day that would paralyze the left side of his infant body. Ryan also does not talk but he does communicate. Ryan teaches, transforms and inspires. He is the catalyst behind the worldwide success we are seeing. It is not measured in dollars; it is measured in lives who were given a chance when hope had long sense been acquiesced.
I hope that you will see that there is a story to be told. Your willingness to raise awareness on behalf of individuals like my son Ryan will give a voice to a silent Dandy-Walker constituency who can not advocate for themselves.
Thank you in advance for your consideration.
Eric
Instead of passive acceptance of the diagnosis our family was facing we chose to embrace the experience and saw an opportunity to fill a worldwide void in Dandy-Walker advocacy. Almost overnight we arrived at the understanding that it was our purpose to advocate for individuals like Ryan who could not advocate for themselves. Whether by divine arrangement, destiny or fate we became accidental advocates.
In calendar year 2007 we formed the only national non-profit for Dandy-Walker Syndrome called the Dandy-Walker Alliance (www.dandy-walker.org), testified before Congress, worked with a film producer on a documentary that will debut in January 2008, were successful in getting congressional legislation introduced, were profiled on a local television station, appeared in numerous newspaper articles and congressional press releases and was even honored by being the subject of a speech delivered on the floor of the U.S. House of Representatives. However, the best part by far is the daily opportunity to serve individuals worldwide to provide educational materials and serve to raise the profile of Dandy-Walker Syndrome.
The journey was not always easy. Along the way Ryan would endure two brain surgeries and suffer from up to eight seizures a day that would paralyze the left side of his infant body. Ryan also does not talk but he does communicate. Ryan teaches, transforms and inspires. He is the catalyst behind the worldwide success we are seeing. It is not measured in dollars; it is measured in lives who were given a chance when hope had long sense been acquiesced.
I hope that you will see that there is a story to be told. Your willingness to raise awareness on behalf of individuals like my son Ryan will give a voice to a silent Dandy-Walker constituency who can not advocate for themselves.
Thank you in advance for your consideration.
Eric
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- coleman1324
- 8 months ago
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