Wednesday, February 25, 2009
Tuesday, February 24, 2009
The letter I referred to a couple posts ago...
Below is a letter I received last week, it was dispersed to all MDA employees. I know many of you have listened to me discuss how much this job has come to mean to me, personally. Now, I hope you can get a glimpse of WHY this job matters, truly matters.
If you are so inclined you can participate with MDA through many avenues currently. Shamrocks around your local community benefit MDA~ join my Stride and Ride team~ donate to Stride and Ride. If these don't appeal to you, just rejoice in the fact that you are healthy, your children are healthy, and there are people across this nation researching so that those stricken with a neuromuscular disease and many other diseases are steadfast in finding a cure, improving quality of life, and assuring people there are answers to some of the thousands of questions.
As many of you know, ALS Therapy Development Institute President Sean Scott was stricken by the very disease he sought to help defeat, as was his mother before him. Before he succumbed to ALS a few days ago, Sean wrote the attached letter to be released by his wife following his death.
All of us who were privileged to know and work with Sean are profoundly saddened to learn of his death, as I know will be as well the thousands we serve whose lives have been affected by ALS – so important was he to our effort against the disease.
When that effort succeeds, as it must, the achievement will owe much to Sean. Had it not been for his vision and dedicated hard work, ALSTDI -- which has given rise to our largest and most promising ALS project ever -- might never have become the most powerful existing source of hope for the thousands with ALS and their loved ones.
- Jerry Weinberg
Subject: Sean Scott 1969-2009
Hello my friends,
If you’re reading this then I am gone. Dead at 39 of this miserable disease that afflicts my family.
Just last year I was worried about turning 40. Now it appears I’ll never have the chance. As I write this I’m not sure precisely when I’ll die, but my lungs are failing me and it seems as though it will be soon.
ALS is a hell of a disease. It’s both surreal and horrifying to watch as muscles fail and with them skills that you spent a lifetime developing simply disappear. I’d trade every minute that I’ve got left for just one more chance to run across the tennis court and crack a forehand.
I spent the last decade building an infrastructure to combat this disease. I had declared war on it but in the end it got me first. At a minimum, I think I earned the right to be referred to as KIA and not a victim. I’d prefer that you remember me that way.
If you were around for any of the machinations related to my battling ALS you might have mistaken me for an ambitious person. In reality, I did it all so that I wouldn’t have to tell the green-eyed girl that I love that I’d be leaving her all alone. You may pity me for having half of my life stolen but you should know that the part I got to live I lived happily and in love.
I’ve had a lot of good friends in my life and a lot of good times. As this disease took hold of me and my ability to be independent flowed rapidly away, the people that stuck near me and treated me like a normal person have become my heroes. My wife Nancy and my father Richard took care of me around the clock and made sure that I could do absolutely anything I wanted to. My buddy Dave spent most of the last year sleeping on my couch just so that he could be around to keep my spirits up and to pick me
up if I fell. Augie and Lynne made it possible for me to keep my job while battling ALS even when I was really too sick to do it. Maureen did half of my work and found a way to make me effective and boosted my morale in an incessant fashion. My Uncle Ed and Aunt Cheryl made sure that I wanted for nothing and make sure that no chance at a cure was left untried. Fernando made great strides to try to take care of me. Rob Rodin gave me support and peace of mind when I needed it the most. Steve Perrin tried his best to help me. Tommy, Cynthia, Pam, and Joe all did their very best to assist me. My cousin Dito and his wife Michelle bought me an adjustable bed so that I could sleep with my breathing problems. My buddy Mike kept us sane by performing a ridiculous number of menial chores around the house. And my video golf buddies Dave, Fernando, and Chris who all learned to play Tiger Woods Golf online so that I’d have something entertaining to do.
I still haven’t wrapped my head around death. It’s truly a shame to work your whole life on bettering yourself and learning only to have that all disappear in an instant.
Whether I’m ready for it or not, it is coming and I’m going to try not to be a pussy about it. If I have in any way wronged you I beg your forgiveness, if you have in any way wronged me I offer you mine. It’s going to be a tough road for my wife and my father. I would humbly ask that if you are ever in a position to help either of them that you do so.
I wish you all a long life, a happy life, and a death you don’t see coming. Love, -Sean
--------------
Sean Scott
President
ALS Therapy Development Institute
If you are so inclined you can participate with MDA through many avenues currently. Shamrocks around your local community benefit MDA~ join my Stride and Ride team~ donate to Stride and Ride. If these don't appeal to you, just rejoice in the fact that you are healthy, your children are healthy, and there are people across this nation researching so that those stricken with a neuromuscular disease and many other diseases are steadfast in finding a cure, improving quality of life, and assuring people there are answers to some of the thousands of questions.
As many of you know, ALS Therapy Development Institute President Sean Scott was stricken by the very disease he sought to help defeat, as was his mother before him. Before he succumbed to ALS a few days ago, Sean wrote the attached letter to be released by his wife following his death.
All of us who were privileged to know and work with Sean are profoundly saddened to learn of his death, as I know will be as well the thousands we serve whose lives have been affected by ALS – so important was he to our effort against the disease.
When that effort succeeds, as it must, the achievement will owe much to Sean. Had it not been for his vision and dedicated hard work, ALSTDI -- which has given rise to our largest and most promising ALS project ever -- might never have become the most powerful existing source of hope for the thousands with ALS and their loved ones.
- Jerry Weinberg
Subject: Sean Scott 1969-2009
Hello my friends,
If you’re reading this then I am gone. Dead at 39 of this miserable disease that afflicts my family.
Just last year I was worried about turning 40. Now it appears I’ll never have the chance. As I write this I’m not sure precisely when I’ll die, but my lungs are failing me and it seems as though it will be soon.
ALS is a hell of a disease. It’s both surreal and horrifying to watch as muscles fail and with them skills that you spent a lifetime developing simply disappear. I’d trade every minute that I’ve got left for just one more chance to run across the tennis court and crack a forehand.
I spent the last decade building an infrastructure to combat this disease. I had declared war on it but in the end it got me first. At a minimum, I think I earned the right to be referred to as KIA and not a victim. I’d prefer that you remember me that way.
If you were around for any of the machinations related to my battling ALS you might have mistaken me for an ambitious person. In reality, I did it all so that I wouldn’t have to tell the green-eyed girl that I love that I’d be leaving her all alone. You may pity me for having half of my life stolen but you should know that the part I got to live I lived happily and in love.
I’ve had a lot of good friends in my life and a lot of good times. As this disease took hold of me and my ability to be independent flowed rapidly away, the people that stuck near me and treated me like a normal person have become my heroes. My wife Nancy and my father Richard took care of me around the clock and made sure that I could do absolutely anything I wanted to. My buddy Dave spent most of the last year sleeping on my couch just so that he could be around to keep my spirits up and to pick me
up if I fell. Augie and Lynne made it possible for me to keep my job while battling ALS even when I was really too sick to do it. Maureen did half of my work and found a way to make me effective and boosted my morale in an incessant fashion. My Uncle Ed and Aunt Cheryl made sure that I wanted for nothing and make sure that no chance at a cure was left untried. Fernando made great strides to try to take care of me. Rob Rodin gave me support and peace of mind when I needed it the most. Steve Perrin tried his best to help me. Tommy, Cynthia, Pam, and Joe all did their very best to assist me. My cousin Dito and his wife Michelle bought me an adjustable bed so that I could sleep with my breathing problems. My buddy Mike kept us sane by performing a ridiculous number of menial chores around the house. And my video golf buddies Dave, Fernando, and Chris who all learned to play Tiger Woods Golf online so that I’d have something entertaining to do.
I still haven’t wrapped my head around death. It’s truly a shame to work your whole life on bettering yourself and learning only to have that all disappear in an instant.
Whether I’m ready for it or not, it is coming and I’m going to try not to be a pussy about it. If I have in any way wronged you I beg your forgiveness, if you have in any way wronged me I offer you mine. It’s going to be a tough road for my wife and my father. I would humbly ask that if you are ever in a position to help either of them that you do so.
I wish you all a long life, a happy life, and a death you don’t see coming. Love, -Sean
--------------
Sean Scott
President
ALS Therapy Development Institute
Tuesday, February 17, 2009
So my mom may be the ONLY person to remember this
but when I was young, like 7, I was given an award by a sorority based on some artwork that I did in school.
"Share the Shamrock it is Loving and Caring" I will need to get a picture of the picture I drew that 'won' in this contest that I didn't know I was entering. It was a pretty great experience, we went to a nice lunch, they thanked me and presented the artwork framed. It was also on EVERY cover of the agenda for the day.
The funniest part was I didn't know what we were doing and when we arrived I didn't even recognize my own artwork. HAHAHAHAAA
I need to find a pic of this ... it is a GREAT memory.
"Share the Shamrock it is Loving and Caring" I will need to get a picture of the picture I drew that 'won' in this contest that I didn't know I was entering. It was a pretty great experience, we went to a nice lunch, they thanked me and presented the artwork framed. It was also on EVERY cover of the agenda for the day.
The funniest part was I didn't know what we were doing and when we arrived I didn't even recognize my own artwork. HAHAHAHAAA
I need to find a pic of this ... it is a GREAT memory.
What a great weekend
I hope EVERYONE had a great weekend and Valentines Day, I did!!! :)
I went for my run Saturday evening-ish and I came home to that precious bag and these...
Jon surprised me, we had a low key evening of spaghetti and a movie. I hope everyone had a great weekend. Love you aLL!
Thursday, February 12, 2009
Why we do this...
There is a letter, written by a man that spent his career life studying and researching to find a cure, to create a better quality of life, to explain WHY this happens to some people. Why a disease arrives and takes away muscle function, takes away a person's ability to do things like type the words here, scratch their nose, swallow. While leaving your brain fully functioning.
He lost his mother to ALS and had an emotional attachment to finding a cure and an answer. Then he was diagnosed with ALS and a few days ago he lost his life to this disease, at 39 short years of age. REALLY?!
I will see if I can post his letter here- I need to get it from work. There has not been a day in my almost 6months that I ever wondered WHY I would forever CARE about MDA. But, this letter has started a new fire within me, I have no understanding of why people would NOT WANT to help. There is NO defined RHYME or REASON to why these diseases 'choose' the people that suffer from them, but there are hundreds of researchers and THOUSANDS of people that want study genetics/muscles/etc and want to FUND these researchers.
Stride and Ride funds research, fully. Every penny raised goes straight to RESEARCH and the research is getting CLOSER AND CLOSER to finding answers. MDA funds research without assistance from the government, MDA funds wheelchairs, leg braces, breathing treatments, communication devices, clinics, support groups and summer camp. How amazing is that? I think it is pretty fantastic and I am so THRILLED that this is where I found my way.
I know you all didn't want a rundown of what MDA does, but to really understand why I feel so strongly about Sean's letter and his goals along with MDA's vision it is necessary to have a basic understanding of what this organization is.
This organization is HELP for TODAY, Hope for TOMORROW.
He lost his mother to ALS and had an emotional attachment to finding a cure and an answer. Then he was diagnosed with ALS and a few days ago he lost his life to this disease, at 39 short years of age. REALLY?!
I will see if I can post his letter here- I need to get it from work. There has not been a day in my almost 6months that I ever wondered WHY I would forever CARE about MDA. But, this letter has started a new fire within me, I have no understanding of why people would NOT WANT to help. There is NO defined RHYME or REASON to why these diseases 'choose' the people that suffer from them, but there are hundreds of researchers and THOUSANDS of people that want study genetics/muscles/etc and want to FUND these researchers.
Stride and Ride funds research, fully. Every penny raised goes straight to RESEARCH and the research is getting CLOSER AND CLOSER to finding answers. MDA funds research without assistance from the government, MDA funds wheelchairs, leg braces, breathing treatments, communication devices, clinics, support groups and summer camp. How amazing is that? I think it is pretty fantastic and I am so THRILLED that this is where I found my way.
I know you all didn't want a rundown of what MDA does, but to really understand why I feel so strongly about Sean's letter and his goals along with MDA's vision it is necessary to have a basic understanding of what this organization is.
This organization is HELP for TODAY, Hope for TOMORROW.
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