Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Saturday, January 7, 2012

Happy Birthday to the Angelman Syndrome Foundation

When the Angelman Syndrome Foundation at was created, I was learning how to drive a car. Most of the time, this involved my parents, watching out as my sharp right or left turns caused various items in the car to become flying projectiles. 1992 was a fun year, as I had Biology class, of which I spent a good part of it, throwing basketballs made of notebook paper into an empty fish tank, that the teacher couldn't see high above the cabinets. My group of friends and I, defied physics with various stunts in cars that shouldn't have been done, including trying to impress the ladies, with efforts that didn't end up too well but are now quite amusing. Yes, the eye rolling occured even back then, as it does now, and I remember this was around the time that I for the first time saw people with special needs. I was uncomfortable. No, I did not harbor any ill feelings towards them, but our high school was a magnet school, for youth with various intellectual disabilities. I used to avoid these kids, as I just didn't know what to say, what to do, or how to act.

We have come a long way. The same school and the new generation, are incredible. Its night and day difference, and I had my introduction to a child with special needs with Tommy. Yes, receiving the diagnosis of Angelman Syndrome was devastating. It hurt so badly, to hear that I was now the father, of a child that was not going to play baseball, go fishing, or learn to become a history geek that I had so envisioned for him. Yet, I learned a lot from Tommy, and the most important lesson was compassion. He hugged and loved everyone, and its something I've tried to do much more. I miss him very much, as he went to God far too early in 2009, but his legacy lives on. His school was a place of refuge, where the administrators and teachers, everyone there, were passionate about children with intellectual disabilities. Young students, of elementary age "get it," as they are giving up their recess and lunch time, to partner up with kids who have Angelman Syndrome and other conditions. Those were my best subjects, and I am thankful that these young girls and boys are making such sacrifices. I tell them this on a regular basis, and it has been proven, to help so called "mainstream students," work with others who have disabilities.

So how does this correlate,  with the Angelman Syndrome Foundations birthday? Very simply, the ASF is without a doubt the biggest and most influencial organization with regards to this condition. While there are other groups, the ASF's research money, that has been raised with the love and help of parents, friends, and businesses, have just proven that with already FDA approved Cancer fighting drugs, to perhaps having a cure for not only Angelman Syndrome, but a whole host of conditions on the Autism Spectrum and elsewhere. Recently published in Nature, the most respected journal, the Angelman Syndrome Foundation and all of its staff, volunteers, and everyone who has partnered with it, supported it, should be proud of this incredible accomplishment. There has been agony and pain along the way, but just like the ASF has not given up on a cure, we should not either.

The reach of the Angelman Syndrome Foundation is impressive. Worldwide. Yet, what really makes me happy about the ASF, is the walks. These are where I have gone with Tommy, and with him in Heaven, missed but still in my heart. My first one was very painful, as I went with Tommy and my family, and cried nonstop. It hurt so bad, but at the same time, it was reassuring. I saw different generations of angels, and parents who had gone the distance. These pioneers greatly helped a then younger man, understand that I would be able to enjoy Tommy's accomplishments, even though there were certainly hoops to jump through. I am thankful to these parents, along with the ASF's support with IEP's, understanding more what Angelman Syndrome is, and for their passion in not only awareness, but in finding a cure.

I miss Tommy everyday. He lost his life to a seizure, but his legacy must go on. With the Angelman Syndrome Foundation it most certainly does, as I am excited about the upcoming walk this May outside of the D.C./Baltimore area. This year promises to be exciting, with Dr. Philpot's research being released even more, and other efforts by the ASF and other groups, who all want the cure that has been elusive, but is now closer than ever. 2012 promises to be by far the most exciting year for Angelman families, and if you would like to make a tax deductible donation, to the Angelman Syndrome Foundation, simply go to Be a part of something good, from the heart, and that is going to both help parents that get that diagnosis and need moral support, along with being on the cutting edge of research that promises to bring new changes to the world as it stands. Happy Birthday to the ASF, to its staff, and to all of the families who have been responsible for its creation. You have touched many hearts, and continue to be an organization, that all can be proud of.

No comments:

Post a Comment