What is really important and there is hope

I know many people don't watch the MDA-Jerry Lewis Telethon. It can be depressing, it can be campy and many of us are just to busy with our lives to really spend any time watching it.  We may give money at 7-11 or to the local fireman and then move on.  I have watched the telethon since I was a little kid and the telethon was only in NY.  Twenty plus years ago my Mom and her brother, my Uncle, were stricken with ALS (Lou Gehrig's Disease).  ALS is a terrible disease that in the overwhelming majority of cases is not hereditary, but is always fatal.  It is one of the 40+ nueromuscular diseases covered under the MDA umbrela.  Ever since then I have been involved in the fight for a cure for ALS and MDA.  Every year I force myself to watch at least some of the telethon to support the cause, donate what I can afford and watch in shock and awe at the courageous victims and their families of these terrible diseases and the great work that MDA does.

Over the last several years the researchers have been making more and more progress finding the genetic roots of many of these diseases.  However, tonight I saw a real miracle that moved me to tears.  They had a family with three beautiful little children.  The youngest daughter had one of the fatal forms of MD (I think it was called Pompe's disease). In fact, this family had had another daughter who has died from this same disease. Due to research funded by MDA, approval was just given to a drug that supplies this little girl with the enzyme that her muscles are lacking.  She takes it intravenously every other week. She is now walking and well on her way to recovery.  Seeing this family benefit from this miracle of modern medicine, while realizing it did not come soon enough for their other daughter, just put me over the edge.  Having little children of my own, I could not even begin to fathom the pain and loss these people went through.  I could also not truly imagine what it  must be like to know, that at least one of their daughters may actually survive and recover, while feeling the pain of the loss of their other. Talk about bittersweet.  It gave me hope that one day, we will find cures for all of these terrible diseases and no one will ever suffer watching their loved one become trapped in a body that doesn't work anymore. I know there are many worthy causes out there, but MDA and the great work they do is one that I think is more than deserving.

We spend so much time talking about this worm, that disclosure and other topics in security.  Every once in a while we should stop and look at what is really important and the things we take for granted every day. Our health, our children's health, just walking, running and breathing.  I hope you are never touched personally by any form of MDA, but for the sake of those who are, I write today and ask that you do something about it.