BENEFITING: Chromosome 18 Registry and Research Society
EVENT DATE: Feb 23, 2013
Dear family, friends & interested strangers,
We finally took the plunge and signed up recently (yesterday) for our very first 5K. We'll be walking and wheeling through the Disney Royal Family 5K at Epcot on February 23, 2013. Because this family friendly event also includes a stroller segment, Alex will also be able to participate in his wheelchair! We'd also love to see him actually cross the finish line on his own two feet.
That day is also my 35th birthday, so we're really looking forward to spending some quality time together having fun and even better-raising money for our favorite charity-the Chromosome 18 Registry & Research Society. They've done some really amazing research and advocacy, and are truly close to our hearts. We've benefitted immensely from the medical knowledge and emotional support of this group of super parents and friends.
Many of you know most or all of Alex's story-he was born weighing only 4 1/2 pounds, and diagnosed with Tetrasomy 18p just a few weeks later. There was very little available information on his diagnosis, and we were initially given a very grim prognosis. There are only a few hundred other individuals worldwide with Alex's diagnosis, and so the Chromosome 18 Registry has been invaluable for us. Over the last 4 years, Alex has had numerous surgeries and medical procedures, but he greets every day with a beaming grin.
You can click here at http://www.chromosome18.org/ to get some more information on The Chromosome 18 Registry & Research Society, or to make a direct donation there (or by mail.) If you're in the area and would like to join our team, please email me! We also welcome anyone who would like to participate virtually by joining our team here. Thanks!