The Angelman Walk: The Importance of it All

This is going to be my eighth Angelman Syndrome Foundation Walkathon on May 19th, 2012. It is going to be both joyful and painful, but much more of the former, as a hug from an "angel" means the world. The first walk in 2005 was an eye opening experience, as I was still in shock from my son Tommy's diagnosis of Angelman Syndrome(http://www.angelman.org/) in the previous November, and not sure what to expect. I cried a lot of tears, but at the same time, had a better understanding of what we were contending with. There are a lot of walks across the United States on this day, and depending on where you are, one should be within reason. We were blessed to have been only fifteen minutes to our first one, although it has moved a bit, its still close enough to get there easily enough. Getting to meet other people, provided a lot of relief, in first of all knowing "others have dealt with this." Its a huge weight off of your shoulders, and seeing younger and older "angels" as children with a deletion of chromosome 15, showed tangible results to how physical therapy and other services could be helpful.

Our whole family would get ready for every ASF walk. There was a finish line, some entertainment, educational materials, and most important of all, connections to be made. It is a lot of fun, and although each location across the U.S. has different activities, the key of course is hoping for the weather to cooperate. Every year has been the case, and some of my family members have chosen to jog the course, as we walked it. Our boy Tommy had fun at these events, and I'll never forget him and one of his buddies, grabbing at each other's chewies during the walk. Each angel crosses the finish line, whether immobile or otherwise, and parents, grandparents, siblings, cousins, and friends cheer. It is something that all in their lifetime should attend at least once, because I have a feeling that if you go to one, you will feel that you've just got to return. There is a lot of support here, and for a parent who has just received a diagnosis, this is where you can meet your "extended family," that you shall become close to.

Of course, the Angelman Syndrome Foundation's Walk is a fundraiser, and there's no minimum or maximum to attend. The last few years have been successful, and now it is paying dividends, with Dr. Ben Philpot's research getting much needed funds at the University of North Carolina Chapel Hill. His work with Angelman Syndrome, is without a doubt the largest yet, and has been featured in Nature, which is of course among the most respected scientific journals. The odds of a cure have been greatly improved upon with his recent discoveries, all of which are FDA approved, and parents of this generation and others need this hope. With each walk, and also each donation, I am honored to say that it is going to a well deserved organization, that is doing everything in its power to find not only a cure for Angelman Syndrome, but also provides support for families who really need it. This is even more important, considering how "spread out" the community is, with Angelman/AS being only one in every 15,000 births or so. At the walkathons or at http://www.angelman.org/, you can find information about services that might be available through your town or school, and find out what works best with regards to therapies until Dr. Philpot and the work of others continues on, to just deliver jaw dropping results.

My son will not be with me this year, nor was he there in 2011, or 2010. Tommy's last walk in 2009, I do not remember much of it, other than a lot of family from out of town came. We had a good time, and Tommy crossed that finish line, walking with assistance. It is very helpful to still go, as while he did pass away in 2009, due to an Angelman Syndrome related seizure, I feel obligated to be there, from the bottom of my heart. 2010 was brutally difficult, as I sat out in my car afterwards, just numb and completely upset. Yet last year was, of course filled with tears, but of the joyful variety. The Walk Coordinator asked me "Would you volunteer for anything?" My response of "anything you want," turned out to be a blessing. He is a wonderful man, and had me as the "Kids Entertainment", which is something that just seemed to be "Are you kidding me?" at the time. Yet he was right, as we had a karaoke set up, children, angels dancing along to the Justin Bieber music that has not been listened to since last year. It was a lot of fun, but the best part about it, was the hug from a young angel at the end. There are no words that can express my heartfelt thanks to her for this, other than a continued promise to be at each and every one of these, until that cure is found. 2012 will be an exciting year with this new research, and whatever Walk you are at, you shall find a lot of love, a whole bunch of support, and families who know you very well.