Welcome FSU and BC Fans

I would like to welcome all of the FSU and BC fans that learned of our growing online community here at Project 2-4-20. I am actually writing a few days ahead of the game so as to make sure that those inspired into quick action from our story presented this upcoming weekend will know that they are at the right spot.

The story line is quite simple and detailed in earlier entries on this site, which I invite you to review at your convenience. Essentially, I am one of the lucky ones when I was diagnosed with ALS (aka - Lou Gehrig's disease) in September 2007. At this point, you have probably spit your morning coffee all over your monitor, so I will wait until you have a chance to grab a few paper towels and clean that up.............. As I was saying, I am one of the luckily ones on several different fronts. Now admittedly, all the blood testing and diagnostic procedures are no fun and certainly loosing the ability to speak is less than ideal. However, when faced with such a situation as a life threatening illness, you really only have 2 choices when you eliminate all the back ground noise: you either choose to live or you choose to die. I chose to live and I thought that I would do it with a giant exclamation mark!

So where does the luck come in as many of you are probably asking. Well the first thing that you do in this situation is reflect upon your life to date and tally up your personal scorecard. Luckily for me, I was pleasantly surprised in what I found and most importantly I was comfortable with who I was. While I am not a saint by any means, not having a whole host of past transgressions hanging over my head was a God send. Next you come to realize who and what is important in your life. Again, luckily for me, I have an incredible wife and family and an extended support group as evidenced by our mini-football reunion this weekend. Even on my worst days, this support provides a much needed lift. The final stoke of luck is clarity of purpose. I can assure you that there is nothing like the diagnosis of terminal illness to snap your attention to what matters in life. Suddenly the slow driver in the fast lane doesn't bother you so much. What matters is making the most of your remaining years and leaving a lasting legacy, which in my mind includes helping others less fortunate than yourself. At the end of the day, that is my focus; helping others with ALS and finding a sustainable treatment or cure.

This is where you and I can come together for a common cause. In the top right margin corner of this site, you will see a link to my donation site for the ALS Association. As a take off on the Project 2-4-20 theme, I plan on raising $2,042,020for the benefit of the ALS Association. These monies will be put to use in research and development, equipment acquisitions for PALS, home modifications, etc. All I ask is that you take a minute to click on this link and make a donation. To illustrate my commitment to cause, I am personally contributing $5,000 to the effort. While I realize that amount is not doable for a lot of people in these challenging economic times, any donation size is greatly appreciated. Who knows, your donation could be the one that leads to a cure.

For those of you who did not have a chance to read the Tribe at the game, I have copied a draft of the article here. This was created by Rob Wilson, who is a long time principal of the Sports Information Department at FSU and truly one of the good guys. His effort below was an incredible act of giving; one for which I don't have the words to properly express my gratitude. Suffice it to say I am eternally grateful.

From the Press Box vs. Boston College 2008

Florida State and Boston College will complete what we hope will have been a perfect Homecoming experience for nearly 100,000 Seminoles fans and alumni who have almost certainly trod all over campus over the last two days and into tomorrow.

Over the last two days one could see families stopping in front of dorms pointing windows out to small children and likely telling them how they used to live right there. Folks walked across Landis Green showing off Strozier Library and almost surely inflating to anyone listening the number of hours they spent in those hallowed halls.

For some of us the fraternity house that we called home is now a parking lot, but to many more the humble classrooms, laboratories, and lecture halls of our past have been replaced with wonderful state of the art structures that have been skillfully blended into what has truly become one of the most beautiful campuses in the south.

While architecture, familiar locales and football all make Homecoming a great event, it is the people and the memories that perhaps make it most special. Look around tomorrow and you will notice that on Homecoming weekend almost no one is alone. Usually it’s not just couples, but family groups or gaggles of aging men and women trying to relive the good old days. But why are there so many alumni band members charging onto the field in pre-game? Why do former NFL Seminoles make it a point to return. Why are you here?

Just one story of why seven members of Seminole teams of the early 90’s came to campus this weekend and are attending tonight’s game should touch you. This group will not be introduced at halftime to the roar of the crowd despite the fact the names are most familiar to FSU fans. They did not come back for that. While several of them regularly attend games, they are back this weekend to be with a teammate fighting a tougher opponent than Boston College ever thought of being.

Former punter John Wimberly, center Robbie Baker, safeties Bill Ragans and Leon Fowler and kicker Dan Mowrey are back this season with a teammate. I’m sure most Seminole fans can remember the gutty performance of Robbie Baker playing at LSU despite a four-inch gash in his leg. I know anyone over 15 remembers Billy Ragans laying out receivers who dared cross the middle. Most of us marveled at Leon Fowler’s blend of speed and strength. Coaches relied on John Wimberly to boom them out of danger and looked to Dan Mowrey to split the uprights. We have memories of these players and they, in turn, have memories as well.

You can name the Seminoles gathered around a teammate this weekend, but you probably can not name him and that is alright. Keith Jones – not our Keith Jones on Sun Sports and radio – but Keith “pitt-man” Jones came to FSU as a walk-on and battled through all the challenges a non-scholarship player faces eventually earning both playing time and a letter as a linebacker and defensive back. He saw considerable playing time on numerous special teams, but his real satisfaction came from just being a part of the FSU team.

Jones is here today with his teammates, but he can’t tell you how much it means to him. He can’t verbally express what it must feel like to roll through the state of the art locker room that replaced the modest digs where he and teammates dressed and trained. He won’t be able to describe how cool the stadium looks or how impressive the campus seems or how much the guys mean to him.

Jones’ voice, but hardly his spirit, has been silenced by ALS (Lou Gehrig’s disease). Most are aware of the terrible toll this condition takes on those who suffer from it, but Jones and his teammates are determined to make us all more aware of what they can do to help those who have ALS.

“We all learned such great lessons at Florida State from Coach Bowden, Coach Andrews, Coach Amato and Coach Burnham,” said Mowrey. We all learned to strive for greatness not only in football but in everything we do. Keith is the true representative of the ideals we all learned through the game of football. I have no doubt Keith will persevere in his battle with ALS not only physically but emotionally and spiritually. He is a friend and mentor to a lot of us.”

Hopefully in reading this you get the sense that friends and family of former Seminole Keith Jones marvel at him. If you visit his blog at http://www.mkjonesyblog.blogspot.com/ you will to. He is taking on ALS head on and as a sample of his attitude read a bit of this personal mission statement he wrote when diagnosed… “The intent of project 2-4-20 is to live strong and live well through Feb 4, 2020. The concept of merely surviving until I am 50 years old and 1 day is not acceptable…”

Jones’ teammates would like for you to visit Keith’s site and see if you might be able to help those fighting ALS all over the world.

Tonight’s game is the culmination of a great event that occurs once a year on college campuses everywhere. For most of us this week has been all about Homecoming, but for others in the stadium tonight - it is more about coming home.

Random Thoughts

It has been a while since I last penned a journal entry. I want to thank all of the well wishing and prayers that have come my way in the interim. Your kind words and positive thoughts represent an incredible blessing.

On Tuesday, October 21st, I will be undergoing out patient surgery for the insertion of what is called a PEG Tube. I realize that in most cases, surgery is not tied to a very positive event. However in this case, the PEG Tube should be a very inviting proposition all things considered. Essentially the PEG is a soft piece of rubber that will be secured inside my stomach and then routed a few inches outside of the skin. The tube is then used to supplement my daily caloric intake and hydration. Consequently, the next time you see me I hope to have some weight back, specifically some "junk back in the trunk". Also, if we happen to go to dinner, don't accuse me of being cheap if all I order is the soup. The chances are that I probably enjoyed a delicious meal through a straw before joining you.

If the Seminoles go 8 and 4, Jimbo Bowden should be coach of the year in the ACC. If they go 9 and 3, Jimbo Bowden should be coach of the century!

Am I the only one that thinks Urban Meyer and Steve Markowski are twins separated at birth? For you that don't know Steve, he is one of my best friends and father to my God Daughter. He is also an avid Gator fan and Urban Meyer impersonator but with much more personality.

We traveled to California for vacation at the beginning of the month. I have not been everywhere but I am pretty well traveled. I think the coastline of the Monterrey Peninsula is the most beautiful back drop in the country. If you have not been to the Lodge at Pebble Beach, go. If you do not have the money, save. I have been two times now, and I have been awestruck on both occasions.

With respect to life and politics, I feel actions speak louder than words.

As a life long Red Sox fan, is it okay that I find myself not feeling bad about the pending defeat at the hands of the Tampa Bay Rays?

How mad are Mitt Romney and Hilliary Clinton right about now?

Finally, as several of you know, one of my main points of focus has been attempting to identify my calling in the next chapter of my life. Real estate has been so good to me for so long that it is hard to think of doing anything else. As I have told many a soul, this is not a job nor a career; this is a lifestyle. However, I realize that a mute mortgage banker that rolls in a 10:00 AM and strolls out at 4:30 PM has his limitations. My partners have been so understanding as this process has unfolded; I am deeply indebted for their patience and support. They only thing that I regret is showing them my new Dynavox computer that actually speaks for me. Now each morning, I am required to give the weather report because my computer has the same voice as "Local on the 8's" from the Weather Channel (AT&T Mike). They also make me type in off color humor, which doesn't sound so bad when I switch to Audrey with the English accent.

Now back to my original premise which was finding a new calling as my real estate career winds down, whenever that may be. Early one morning this week a concept kept coming to me as I desperately tried to get more sleep. When I got into the office, within about 5 minutes the following was completed.

Alas, the Lord has taken my tongue so that I shall say no more, but he has given me eyes to witness his grace and ears to hear his song of redemption. The Lord has provided me with strong hands to apply pen to parchment and record his great works. In this glory I will find strength, and with this pen I shall surely move mountains.

Not being the brightest bulb, I didn't see the significance of this at first blush and I guess not being able to speak and relying upon a computer to speak for me wasn't enough. Amazingly, until I literally printed this and was reviewing for typos did I realize that my answer for life's next chapter was right in front of me. I will write! I have no idea what I will write about nor what form it will take. If you have any ideas, I would love to hear about them. Otherwise, I will see you at a book tour coming soon!

In retrospect, it is amazing how most times the answers to life's questions are right in front of us if we just take the time to look. As Deepak Chopra says, "the disease of hurrying up" is a major factor in today's culture. I hope you will take a break from your personal rat race to account for all your blessings and take an inventory of the truly important things in your life. You may be amazed at what you are overlooking and the answers that lie before you.

God Speed my friends!

Mission Statement Takes On New Relevance

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

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