Angelman Syndrome, the Families Amaze Me

Every time I have been at an event, with children and adults who have Angelman Syndrome, I am amazed by the level of compassion displayed. It could be anything from the Walkathons to other, smaller events, but the power of these families has lifted me up during my darkest of hours. Angels, as we all know, require around the clock, 24/7 care, and even though this is necessary, they have the heart of champions. Their parents, grandparents, and friends do too. Even with this economy, cut services that all have to contend with, there is a "can do attitude," that inspires so many. Twenty years ago the Angelman Syndrome Foundation at www.angelman.org was created, and what was once impossible, is now closer to reality than ever before. A cure or at least therapies that can help angels.

When the time comes, let's hope, let's pray, that the work of doctors and researchers around the world, can make this event happen. It doesn't matter what organization you belong to, that is involved in this effort, as everyone has their "pair of jeans" that they are most comfortable in. Rather what does, is supporting each other, giving researchers and others who knew our help, their support. A lot of them right now are working hard, and they specifically want, all of the enthusiasm that can be garnered, to be written to them, to folks in the pharmaceutical field, on social media, along with the conventional media that is still powerful. If that passion is lost, the work of a small group of people that over the years is simply unbelievable, do you really want it to go on the backburner?

I do not. We should not. Each and everyone of us, should be supporting each other, angel families, and also at the same time showing the passion that we have in a professional manner. We owe it to the children and adults who have this condition. It is imperative, now more than ever, as we get closer to these discoveries, to band together, and show the collective understanding that researchers and those working hard for a cure, need to see that we are walking hand in hand with them. The same goes for pharmaceutical groups, science based institutions, and your local representatives. They have got to constantly hear "Angelman Syndrome," until they all have discovered what this condition is, and are on board with us all. Angelman Syndrome is a condition that leads to loving people, and may we be more like them.