Mark Your Calendars: May 21st 2011 is the Angelman Syndrome Foundation Walk

I will never forget going to my first Angelman walk, that is sponsored by the Angelman Syndrome Foundation. It was both painful and liberating. Those two words do not generally get together, but that walk in 2005 was a special time. My son Tommy had been born in July 2004, and was diagnosed with having Angelman Syndrome in November of that year. It was not an easy time, with a lot more questions than answers. Yet with the support of a pediatrician, and a special angel named Hal, I was able to find more about the condition. All of this was possible, due to the fine folks at the ASF, who guided me to the proper resources when needed, and helped me to realize the most important thing. I am not alone, there are others out there facing similar challenges, and that Tommy had a group fighting on his behalf.

Arriving at the Chantilly, Virginia location that was the place of my first Angelman Walk, I felt tentative. Tommy was so little, only about eight or nine months, and I just had no idea of what to expect. Looking around I saw a lot of people, and as I approached the crowd, a surge of pain just hit me right in the chest. There were older angels, who never had the chance to have the early intervention that Tommy would receive, and I felt heartbroken seeing these folks who didn't have the luxury of a diagnosis so soon or necessary services. Also, I saw angels that were doing things that some doctors told us were impossible. So much for "doctor's orders." There were also parents, grandparents, uncles, aunts, siblings of Angels, and I realized right there again, that I was not alone by this powerful visual statement.

There were a lot of tears that year. I actually broke down hard after about a half mile on the walk, and am forever thankful to the love of my parents, brother, aunt, and other family members who were there to hold me up. The first walk was a bit hard, but as the day progressed, I felt much better, and finally got a hug from Hal's daughter, which meant the world to me. It was almost as if she was saying "Everything is going to be alright, and you shall survive the challenges that have been thrown your way." That hug meant so much, and I cried tears of pure joy. Until my last day on this Earth I shall never forget her hug, or this walk, which was an eye opening experience on  so many levels.

I've been to each Angelman Walk since. You can find where these events are held at http://angelman.org/. The Angelman Syndrome Foundation is a fantastic charity, which cares deeply about the angels and their families whom they represent, and they are also a resource into seizure research, which is dear to my heart. That is because Tommy passed away in November of 2009 due to this, and the 2010 walk was not easy by any stretch of the imagination. It was so strange not having my son with me, to cross the finish line, yet I felt serenely comforted by the love and support on this trek around Columbia, Maryland. In fact, I did not break down at all, and while there was some pain, I am indebted to the folks for having a moment of silence for Tommy, and for all of the wonderful people I met along the way. This walk was different, but at the same time a glorious occasion, and I will be once again at the Angelman Walk in Columbia, MD on May 21st with my family, and Tommy's younger brother. He will learn firsthand here about Angelman Syndrome, and how the work of the foundation to generate awareness, forge great relationships, and to find a cure for these seizures is of vital importance.

One click. Go to  http://angelman.org/. Consider attending the walk, because it is an experience that you shall never forget. There is so much love at these events, and you will realize that we are all part of a family, regardless of what background we come from. The unity of purpose is on display in a way that you will not see elsewhere, and its so wonderful to see the family you never knew you had, until you go to one of these. There is some shade for you to have a picnic, and to meet others that are in the same boat. This is so important, because being on a Angelman boat ride alone can be overwhelming, but having extra folks to help you steer and navigate the waters, can be very beneficial. If you cannot attend, please consider making a donation to this charity. The ASF has the highest rating on Charity Navigator, and do not waste money on administrative and other costs that take away from, helping those whom they serve. For that reason alone, I hope you will consider supporting them, with either your feet, your wallet, or both. Tommy will be looking down this year, and I plan on bringing a few red balloons in his memory, since that was his favorite color. The journey continues, and with the ASF along with the folks at Vanderbilt University, I know we can find a cure for seizures and get people to join us on this very important mission.