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, August 11, 2012

Angelman Syndrome, CDKL5, Rett Syndrome: Labels are Great But Solidarity is Imperative

Angelman Syndrome. CDKL5. Rett Syndrome. Fragile X. Autism Spectrum. These are all labels, and while they do serve a purpose, they can also divide communities of loving parents, that want the best for their children. These are exciting times, as technology has now eclipsed previously perceived time frames, to move at an expeditious rate that not even fans of science fiction thought previously possible. With the new approaches of treatment by Dr. Weeber at the University of Tampa, and Dr. Ben Philpot at University of North Carolina for Angelman Syndrome, and work involving mice and other laboratory experiments with these other diagnoses, its only a matter of a time before at the very least therapeutic help will become available. God willing it is sooner, rather than later, as too many children have forever slipped through our grasp.

There are many on line competitions, with companies willing to donate financial resources, to worthwhile charities. A lot of these are on social media sites, such as facebook, and they are a wonderful way of obtaining funds and educating others on various medical conditions. At the same time, parents can connect to describe what their little boy or girl is going through, and just like years ago "compare notes." The Internet is fantastic, as it has made our world smaller, and whether its a blog like this or another launching platform such as Twitter or Peep, use those hash tags with care. Skype has been a tremendous tool for parents, and even medical staff's across the world, as visual images can often show, what audible sounds and words cannot describe. I am certain that it has saved lives, and it has also helped parents, bond across the ponds of water that separate our continents.

My only concern, and other parents in the special needs community have brought this up, is that our children's diagnoses can divide. There have been hot competitions for hard to procure funding, and its left people hurt, driving a wedge between people who really need to stick together. The number of parents and children with special needs across the world do number in the millions, but its a drop in the bucket compared to the rest of the population. Even if you take epilepsy, which affects about four million Americans, and 3% of the world, its nothing when compared to major players that are well entrenched fighting ailments such as Cancer and Heart Disease. I'm not saying this is bad, but they are rounding third base in this regard, while the special needs community is a few strides away from first base.

If only there was a way, that all of these groups, whether it be the Angelman Syndrome Foundation, FAST, the International Rett Syndrome Foundation, the CDKL5 project, and others could combine their resources to some degree, it would be phenomenal. Having a list of parents with specialties in other fields, and languages would greatly enhance opportunities, and a mutual aid system of folks spread across the globe would mean so much to parents in need of frequent hospitalizations or advice. We do not know how long we are going to live, but it is imperative for us, to band together for children and people across the world. Most organizations in the special needs fields, are and its not slap against them, limited in their resources, and have decided cure, cure, cure. That makes sense, although it would behoove them, to in this era of computer technology to have a list of resources available at times of inevitable crises that are going to occur. When not if.

I sit back as a simple man, astounded by what I see going on with medical technology. Yet even more impressive, is the love of so many parents around the world, and their willingness to help one another. It doesn't matter what condition, but rather there's a prevailing attitude of unity. Even arguments are settled with an understanding, that we are a family that needs to seize the day "carpe diem" style. The diagnosis is important, but what is even more, is parents of these different conditions on the genetic tree, comparing notes and standing together. There should be no "Your child has this condition, while mine has this." Rather, there should be an understanding based upon compassion, a willingness to learn more, and ultimately a drive to help each other succeed in finding ways to get the scientists and researchers the funding that they truly need.

No comments:

Post a Comment