Happy New Year to all. It was another great year here in SW Florida. I made it to 7 years with ALS, a milestone I never dreamed I’d reach when I moved here 3 years ago. I got married to the most amazing woman, who loves me despite all odds. I helped raise another $35,000 for ALS research. And, while I become progressively more paralyzed, new technology has allowed me to become more independent than I was last year at this time. Shartrina and I got married here at the house in May. I guess even 40 year olds who live with their parents shouldn’t give up hope. The whole weekend was great, with wonderful weather and lots of time with family and friends. We decorated the house and lanai with live tropical plants. It made for a beautiful setting and a romantic ceremony.
Along with Shartrina I gained a whole new family, including 4 sisters and Shartrina’s two sons Myles and Deandre. Myles is a freshman at IU and Deandre is a junior at Lafayette Jefferson. They’re both great kids, and we’re very proud of their impressive academic and athletic achievements. I’m also proud of Shartrina’s athletic accomplishments. She’s a talented and dedicated runner, less than a week away from qualifying for another Boston Marathon.
Just like Lou Gehrig almost 70 years ago, I was told ALS has no known cause, cure or treatment. Fortunately for me though I have 70 years of technology that can make living with ALS, and on 24 hour life support doable. A small computer attached to my wheelchair allows me internet access and the ability to communicate with the outside world through e-mail. A tiny laser attached to the computer recognizes my movements and puts the cursor wherever I choose, while an internal program performs whatever mouse function I stipulate. Other programs allow me to type (slowly), control things like lights, TV’s, fans and stereos with infrared signals, and even talk by converting my typed words into speech. Something I’ve worked on almost daily for the last two years is creating a way to fish anywhere, anytime, in any weather, and without the use of my hands or feet. We are now on what I consider version 3.0.
I have a rod and reel attached to a motor, powered by a small rechargeable battery, and activated with a blink of an eye. It’s working very well so far, and while I take my ability to fish for granted, it is actually quite revolutionary and I’m proud of what we’ve created. No great fish stories to tell. I have caught at least one of every kind of fish that migrates to or lives on shore except for a shark or the elusive tarpon. My goal is to include a photo of at least one of those two in next years
Holiday greeting. For now, here’s today’s catch for dinner and my current fishing setup.
Once again I’m sorry to report that no life changing advances in ALS research have been made this year. There does continue to be an increasing level of collaboration among the leading independent ALS organizations and researchers. This effort is led by the Les Turner ALS Foundation and Northwestern’s ALS research laboratory along with the
Packard Center for ALS Research at John’s Hopkins. Dozens of projects are being coordinated through and conducted at these centers and include research on genetic causes for ALS, stem cell therapies, and investigations into how various proteins affect the nervous systems of ALS sufferers. These research centers continue to be funded largely by donations from individuals and private foundations like the Matt White CureALS Foundation. 100% of your tax deductible donations to The Matt White CureALS Foundation go to ALS research. The Foundation had another great year, with over $35,000 raised for ALS research. Special note must be made of two individuals for their incredible fundraising efforts. Fraternity brother Eric Fairchild, who made the Indianapolis 500 Festival Mini-Marathon his first ever road race. From friends and co-workers Eric collected over $3000 in pledges for the Foundation. And Steve Sanner of Jiffy Lube fame. Through various consumer promotions at Jiffy Lube, and the “Last Man Standing” football pool, Steve raised over $10,000 for the Foundation. If you happen to see Eric Fairchild, which most of you won’t, tell him nice job and thanks, and if you happen to get your oil changed, which most of you will, take your car to my and friends at Jiffy Lube. I hope you all had a wonderful holiday season, and wish you a healthy and happy New Year.
Matt White Matt White CureALS Foundation210 Capstan Drive
Cape Haze, FL