I want to thank everyone for taking the time to find this site and comment as you have. I am so blessed to have such a strong support group; the depth and breadth of well wishers is truly amazing. Thank you all and know that you are making a difference in my life.
For several months now, I've been mulling over how do I make a tangible difference in the lives of others. I have always believed in charitable work and donations. However you can't fully appreciate the impact of charitable organizations until you are on the inside looking out. I now get what drives Lance Armstrong to raise millions for cancer research. When I go to ALS meetings I realize that PALS can't afford wheel chairs and speech equipment much less home adaptations for a wheel chair, a bi-pap machine or a custom bed. Luckily I'm not in that position financially but many PALS are.
What I have concluded is that active fund raising is likely my most valuable weapon for beating ALS and helping other PALS in need. As a start, the partners of Tavernier Capital raised over $12,000 in late spring for the ALS Association. While that was a great way to kick off a capital campaign it was just the start of things to come. I would describe it as sticking a toe in the pool before jumping in. Over the past few weeks, I have had a gut instinct to venture out on something big and bold. This weekend it hit me. I have a developed a personal mission statement focusing on my goal of living well 1 day past my 50th birthday on 2/04/2020. Why not use the same title for fundraising for the ALS Association? As such, going forward Project 2/04/2020 will have both a private and public purpose if you will. The public purpose will be to raise $2,042,020 over the next 3 year period. This money will be coordinated through the ALS Association and will go to fund ALS research as well as provide funds for continued care of PALS vis-a-vis equipment purchases, home adaptations, communication devices, respite care, care giver "burn out" assistance, etc.
Yes, this is an ambitious goal. However, ALS is an ambitious disease that takes no quarter. It has occurred to me that the truly lucky among us find life's calling and make it a career. The truly genius among us find life's calling very early in life and make it a passion. In my case, life's calling came knocking on my door in the form of 3 short letters: ALS. With your help, I hope to one day be described as having found my calling early in life as well.
In the upcoming weeks and months, you will be hearing about my fund raising plans as several things are in the hopper at this time. In the interim, I would like to hear from any of you that might have a creative fund raising idea. I'm looking to get away from the standard formats of golf tournaments, jail breaks, cookie sales, etc. Instead, I'm trying to focus on larger audiences, creative concepts and warm calls as we say in the sales world. I look forward to your thoughts and God Bless to all.
Whoever undertakes to set himself up as a judge of Truth and Knowledge is shipwrecked by the laughter of the gods - Albert Einstein
Monday, September 15, 2008
Saturday, August 30, 2008
Welcome to My Blog
I never imagined becoming blogger much like I never imagined being diagnosed with ALS. Life has a way of throwing you curve balls and the only thing you can do is go with the pitch. As such, I am going to make the best of it and in fact I plan on thriving.
The intent of this blog is to provide a periodic update of how I am doing in a centralized location where my family is not inundated with images of my decline. This is why Alecia and I have been so guarded regarding my condition do date. I hope everyone understands our thought process as Caroline and Mac have been paramount in our decision making. They will have enough on their plate as I breakdown and we didn't see any need to accelerate that process for them.
For those of you whom are not familiar with ALS (aka - Lou Gehrig's Disease), it is a degenerative neuro muscular disorder. Essentially the nerve path between the spinal cord and voluntary muscles is disrupted ultimately causing the said muscle to waste away (atrophy) and cease to function. A good analogy is a flickering light bulb that eventually burns out. The average outcome for ALS is less than ideal (avg life span of 3 years) but there are many exceptions to the rule. I hope to be such an exception given my younger age and elevated level of strength and health going into this. Your ongoing thoughts and prayers will certainly aid in that becoming a reality.
Looking back, my first noticeable symptoms began in February 2007. I didn't realize at the time, but the occasional quivering jaw muscles and cramping of the abdomen were signs of Bulbar Onset ALS. As the months moved on my speech became noticeably nasal in delivery and I began to struggle in enunciating certain sounds. The coup de grace occurred in May of 2007 when I crashed in a 1-bicycle incident on a trail west of Jacksonville. While the crash had nothing to do with ALS, it did leave me with a mangled right shoulder while leaving my business partners wondering if I actually incurred a stroke or head injury. This was the impetus for scheduling an office visit with the neurologist and ultimately led to the formal ALS diagnosis in September 2007.
For those of you whom I haven't seen in a while, you must know that my speech is essentially gone save for 1-word responses. While I still have much to say, I have no way to get it out in a framework that you will understand. Hence I write long winded emails and blogs and I carry a note pad. The other thing that you will notice is that I have lost almost 30 pounds as I write this initial blog. The weight loss is a combination of slowing appetite and muscle wasting of the legs. Specifically my big "butt" is gone and "hamstrings" have been reduced to "hamstring". However, there is a silver lining; for the first time in my adult life I can actually buy clothes off the rack. Finally, you will notice that I walk with a slight limp due to my right lower leg wasting away but that is minor in nature. I won't be embarking on any tri-athalons any time soon but I am getting around just fine. Otherwise, I'm still working, staying fit and trying to keep up with the kids. I'm also still keeping the yard in impeccable condition with aid of a new riding mower and Alecia's help on the push mower.
Several people of has asked what can they do? The most important thing is keeping me and the other ALS patients and care givers in your prayers. Our biggest weapon in fighting this disorder is a strong faith and positive thought. Secondly, I am going to be sending out future correspondence regarding fund raising for the ALS Association (http://www.alsa.org/). I have never met a more dedicated and compassionate group of people. They are spear heading the effort to find a cure and/or treatment for ALS. Additionally, they offer various programs and assistance to ALS patients and caregivers at the local level. Look for more details future as to how you can help.
Finally, I would like to thank Jeff Kinney and the Franklins for providing the motivation and the know-how to make this blog a reality. I am deeply indebted for their efforts.
Faith never knows where it is being led, but it knows and loves the One who is leading - Oswald Chambers
The intent of this blog is to provide a periodic update of how I am doing in a centralized location where my family is not inundated with images of my decline. This is why Alecia and I have been so guarded regarding my condition do date. I hope everyone understands our thought process as Caroline and Mac have been paramount in our decision making. They will have enough on their plate as I breakdown and we didn't see any need to accelerate that process for them.
For those of you whom are not familiar with ALS (aka - Lou Gehrig's Disease), it is a degenerative neuro muscular disorder. Essentially the nerve path between the spinal cord and voluntary muscles is disrupted ultimately causing the said muscle to waste away (atrophy) and cease to function. A good analogy is a flickering light bulb that eventually burns out. The average outcome for ALS is less than ideal (avg life span of 3 years) but there are many exceptions to the rule. I hope to be such an exception given my younger age and elevated level of strength and health going into this. Your ongoing thoughts and prayers will certainly aid in that becoming a reality.
Looking back, my first noticeable symptoms began in February 2007. I didn't realize at the time, but the occasional quivering jaw muscles and cramping of the abdomen were signs of Bulbar Onset ALS. As the months moved on my speech became noticeably nasal in delivery and I began to struggle in enunciating certain sounds. The coup de grace occurred in May of 2007 when I crashed in a 1-bicycle incident on a trail west of Jacksonville. While the crash had nothing to do with ALS, it did leave me with a mangled right shoulder while leaving my business partners wondering if I actually incurred a stroke or head injury. This was the impetus for scheduling an office visit with the neurologist and ultimately led to the formal ALS diagnosis in September 2007.
For those of you whom I haven't seen in a while, you must know that my speech is essentially gone save for 1-word responses. While I still have much to say, I have no way to get it out in a framework that you will understand. Hence I write long winded emails and blogs and I carry a note pad. The other thing that you will notice is that I have lost almost 30 pounds as I write this initial blog. The weight loss is a combination of slowing appetite and muscle wasting of the legs. Specifically my big "butt" is gone and "hamstrings" have been reduced to "hamstring". However, there is a silver lining; for the first time in my adult life I can actually buy clothes off the rack. Finally, you will notice that I walk with a slight limp due to my right lower leg wasting away but that is minor in nature. I won't be embarking on any tri-athalons any time soon but I am getting around just fine. Otherwise, I'm still working, staying fit and trying to keep up with the kids. I'm also still keeping the yard in impeccable condition with aid of a new riding mower and Alecia's help on the push mower.
Several people of has asked what can they do? The most important thing is keeping me and the other ALS patients and care givers in your prayers. Our biggest weapon in fighting this disorder is a strong faith and positive thought. Secondly, I am going to be sending out future correspondence regarding fund raising for the ALS Association (http://www.alsa.org/). I have never met a more dedicated and compassionate group of people. They are spear heading the effort to find a cure and/or treatment for ALS. Additionally, they offer various programs and assistance to ALS patients and caregivers at the local level. Look for more details future as to how you can help.
Finally, I would like to thank Jeff Kinney and the Franklins for providing the motivation and the know-how to make this blog a reality. I am deeply indebted for their efforts.
Faith never knows where it is being led, but it knows and loves the One who is leading - Oswald Chambers
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