May 21st 2011: The Angelman Syndrome Foundation Walkathon

As a good many folks are aware, the Angelman Syndrome Foundation, has a walk every year. On May 21st 2011, folks from across the United States, and hopefully some international locales, will come together and join forces. I will be without my son Tommy for the second year, as he passed away from a seizure related to this condition. Others share the same fate, and my heart goes out to them. While my primary goal is to get rid of seizures once and for all, no matter what condition is behind this menace, it is important to raise awareness of Angelman Syndrome. The Foundation is working hard to do this, along with developing new techniques to increase the chances for developmental milestones, and also for seizure research.

The ASF has the highest possible rating from Charity Navigator, and attending one of these walks, is an experience you will not forget. I'll never forget any of them, including the one after learning of Tommy's diagnosis. I was heartbroken, crying for a good part of the day, yet I also became more hopeful. Its so comforting to know that you are not alone, and that other families are going through a similar challenge. Last year's was especially difficult. I did not want to go, as Tommy had passed away only six months earlier, and the pain was so great. Yet I am happy that I went, along with my family, as we saw many friends and folks that we consider to also be "family." Many angels were in attendance, and seeing them walk across that finish line, was like seeing my Tommy accomplish it. There were more tears of joy than pain, and I am excited about this years one in Columbia, MD for us D.C. and Baltimore folks.

Check out the link at http://www.angelman.org/walk/. Watch the video, and decide for yourself, but I strongly recommend anyone going to see what "love in action" is all about. It is going to take a concerted effort to destroy seizures, and while Vanderbilt University's Kennedy Center and other institutions are taking the lead in research, the ASF is committed to these as well. Some of the money raised will go to these researchers, who are working day and night to find that cure, that all of us seek. It is too late for my Tommy, as it is for other parents of Angels who've had the same heartbreak. Yet, we must walk, and keep our heads held high. Through this walk and other efforts, we will destroy seizures, by wiping them off the face of the earth with our courage, commitment, and love for one another.