Happy New Year everyone. It has been 2 years since I’ve sent an update on how I’m doing and I’ve gotten many complaints about that. I could say that it took me that long to write all of this. I am slow, but not that slow. This did however start out as a Merry Christmas letter.
Not much has changed for me physically over the past 2 years. I feel fantastic. We have a consistent physical routine that includes wearing a vibrating vest to keep my lungs clear and standing up for 30 minutes a day to keep my bones strong and improve circulation. My biggest challenge is communication. I’ve really lost my ability to speak, but still have some sounds people around me can understand. Mostly I use a computer with a laser mouse and on-screen keyboard to type what I want to say. It’s a slow process and getting slower as my head becomes harder to move. The next step will be new hardware that can follow my eyes and click when I blink. We have the hardware and it’s difficult to use now, but I’m practicing and getting better with it. By this time next year I’ll be using my eyes to type.
The biggest change here is that Shartrina is now working full time. She works at the Venice YMCA coordinating a state funded after school reading program for 1st through 3rd graders who are having trouble learning the basics during regular school hours. She’s charged with recruiting and training volunteers, creating lesson plans and teaching and testing the students. It’s the perfect job for Shartrina in terms of her education and experience. She loves the job and has generated results that amaze even her. In less than 2 full school years she’s moved dozens of young students from near total illiteracy to the point of reading above their current grade levels. Based on the number of students and their improvement, her program is by far the most successful in the state. The YMCA has been very flexible, allowing her to set her own schedule and hours. I go to work with her at least one day a week. The kids are quite curious about me and all of my machines. While Shartrina is away, mom and dad stay with me and help with parts of my daily routine. We’ve not hired any outside help so taking care of me keeps everyone stretched pretty thin. I’m blessed to have a supportive wife and family.
The Matt White CureALS Foundation has had two very successful years. In January 2007 we started Team CureALS. Since then 17 different athletes have competed in various endurance events and raised more than $19,000 for ALS research. It’s been a great way to raise funds for The Foundation, and extra motivateion for everyone on the team to try something for the first time, or achieve something new. We had two first time marathoners, a marathoner and a triathlete who came out of retirement to raise money, and a couple of Boston qualifiers. I’ve enjoyed following the training and racing of all the members of Team CureALS, and encourage anyone who’s interested in getting in shape in 2009 to add one more bit of motivation by joining Team CureALS and collecting pledges. Another successful fundraiser is the last man standing football pool. We just completed our 7th season of this increasingly popular pool that topped 200 entries this year. The appeal of the last man standing football pool is its simplicity. Just pick 1 winning team every week. How hard can that be?
Staying busy and active is never a problem for me, which I credit as another thing keeping me healthy in mind and body. Unfortunately everything I do takes longer than I think it will so I never accomplish as much as I want to or think I should. Daily I try to send and reply to as many e-mails as I can. I spend many hours reading and researching the markets and actively trading. It has been a fascinating year to watch, learn and try to eke out some gains. If I’ve learned anything, it’s that making a living managing money would be very difficult. Whenever we have time and conditions allow it Shartrina and I go fishing. Spending a day on the water is still my favorite thing to do. My equipment has evolved to meet my abilities. I have a special switch that I use to activate my reel with the blink of my right eye. Shartrina casts, and I reel them in. We also updated our fishing boat and thanks to the generosity of the people at Carolina Skiff the upgrades were all free. When they heard my story and what we were doing, they offered to customize the boat to fit my specific needs, including a larger motor, center console, new electronics, and a live well. It’s quite a nice fishing boat. The boat doesn’t make the fisherman though, and I still haven’t caught a shark or the elusive tarpon. When I do you’ll all see the pictures.
Another thing that keeps us busy is following the activities of Shartina’s sons Myles and DeAndre. Myles is a junior at IU. He’s majoring in economics, a vice president in his fraternity, and very active in intramurals. DeAndre just completed an active first semester at Florida Atlantic University . He survived a grueling tryout to make the football team as a walk-on. After being unrecruited out of high school, he outplayed the scholarship redshirt receivers and moved up the depth chart to top receiver on the scout team. The good news is he got a lot of reps in practice; the bad news is he had to play against the first team defense every day. He has plenty of bumps and bruises, but loved every minute of it.
Staying abreast of advances in ALS research is an important responsibility both for my own knowledge, and for The Foundation. A major step forward for researchers was taken this year when congress finally passed the ALS Registry Act. The act provides the National Institutes of Health funding and the authority to collect and distribute information on every person diagnosed with ALS in the United States . To me this data collection is a logical starting place for researchers. For the first time ever, scientists will know what lifestyles, environment, and genetics may be most prevalent in ALS patients. Until now we haven’t even known how many people have ALS, their age or sex, or where they live. The Foundation continues to support research at Northwestern where they concentrate on genetics and at Johns Hopkins where teams of researchers study how motor neurons work and whether stem cells can fix malfunctioning nerves. A new benefactor of funds from The Matt White CureALS Foundation is the ALS Therapy Development Initiative. ALS-TDI tests hundreds of drugs and drug combinations looking for positive results in mouse models.
We also have a new addition to our family, a 6 pound baby girl named Abigail. Abby is a beautiful Maltese puppy that came to us from a neighbor who couldn’t take care of her. She’s a sweet little puppy who keeps us constantly amused. Everyone that meets her falls instantly in love. Shartrina keeps adding to her citrus orchard and now has fresh fruit from her own backyard with avocadoes in September to grapefruit in March. Her morning now includes picking 5 or 6 oranges and having a fresh glass of juice with her breakfast. She calls it liquid sunshine. And of course we love watching Butler basketball. They were thrilling to watch last year racking up 30+ wins and a top 10 ranking. This year may be even more fun with three freshman starters, a 12-1 record and a surprising top 25 ranking.
Finally this month marks my ninth year since I was diagnosed with ALS and in April I will have survived 5 years on life support. Much has happened and much has changed in all those years. What hasn’t changed is my love for life, my desire to compete and accomplish new things despite their difficulty, and the love and support of my family and friends. Your continued prayers, well-wishes and frequent visits have made what I thought impossible now so very possible. God bless you all, and Happy New Year.
The Matt White CureALS Foundation