When St. Luke's School freshman Jake Lustig first heard about multiple sclerosis, it left him moved and wanting to do more to help.
"My mother recently reconnected with Deidre Jacobson Ostrowski, a woman she went to high school with," said Lustig, of Somers, N.Y. "That led her to Greg "Jake" Jacobson's Facebook page, Deidre's brother, where he shared his story about being diagnosed with primary progressive multiple sclerosis, and how it has stolen his dream of being a professional golfer."
In 2011, Jacobson's golf career came to an abrupt halt when, after years of baffling symptoms that increasingly limited his physical capabilities, he was officially diagnosed with progressive multiple sclerosis, a debilitating form of the disease in which individuals can lose more and more motor function over time.
A golfer in his own right, Lustig was intrigued. He contacted Jacobson, and the two set up a meeting at a local coffee shop.
"When Jake approached me in February, he asked me, `How can I help you with your MS?'" remembered Jacobson, a resident of Wilton. "It was such an interesting question from a high school freshman. I responded, `Well I doubt you're a scientific research doctor (yet), but anything you can do to raise awareness and support for the critical need to find a cure for MS would be great."
Lustig took a few weeks to explore his options and ultimately came up with the idea to host a golf marathon.
"Greg hosts his own golf tournament to raise money for MS, but he had everything pretty well set and didn't need me to do anything there, so I wanted do something on my own," said Lustig, who has been golfing since he was only three, when he started swinging a plastic putter around the house. "A golf marathon was suggested, and when I approached my golf club with the idea, they gave me a date."
On Monday, July 7, Lustig and seven of his friends will attempt to do what Jacobson says he could not accomplish even in his healthiest days.
"Greg was a regular golf competitor from his childhood years through his time at Williams College and even competed in numerous State Amateurs, Mid-Amateurs and State Opens," said Lustig. "He was an NCAA Golf All-American and professional tour player on the Space Coast Mini-Tour. Now he cannot play at all, professionally or otherwise. I couldn't imagine making it that far only to find out that I had a disease that would never allow me play golf again."
More than 6,000 Connecticut residents, like Jacobson, are diagnosed with multiple sclerosis, an autoimmune disease affecting the central nervous system. The cause is unknown and there is currently no cure for MS. Symptoms can include, among other things, numbness in the limbs, difficulties with vision and speech, stiffness, loss of mobility and, in some more severe cases, total paralysis.
Most people who are diagnosed with multiple sclerosis have relapsing-remitting MS in which patients experience attacks when symptoms flare up. A relapse is followed by recovery or remission of symptoms that can last for weeks, months or longer. Primary progressive MS steadily worsens. Ten to fifteen percent of people with MS are diagnosed with primary progressive MS. However, the progress, severity, and specific symptoms of MS in any one person cannot be predicted. No two people are likely to experience the identical set of symptoms in the same way.
While Lustig will be "playing" golf to raise money, the physical and mental challenges should be very demanding and he promises that all donations will be earned from his determined effort.
The attempt to play six rounds of golf in one day by cart equals 22 miles of golf and two and a half hours per round, that is roughly 15 hours on the course. Lustig plans to begin at 6 a.m. and hopes to finish by 8 p.m.
Each round of golf requires an attested score card and Lustig is in need of a few more volunteers to help record scores. All donations, made payable to "Jake for Jake," will go directly to the National MS Society, Connecticut Chapter.
There are four categories of donations: The Fairway -- a fixed pledge; The Par -- a per-hole pledge; The Birdie -- an agreement to double the per-hole pledge if Lustig completes 108 holes of golf; and The Eagle -- an agreement to at least double your pledge if he scores a personal "Best Ball" of even par or better for the entire day.
Anyone interested in making a pledge should email Jake Lustig at email@example.com or call 508-648-1293.
"Multiple sclerosis sidelined me. It has robbed me of a lifestyle I loved," said Jacobson, who now relies on a cane and often an electric scooter for mobility. "Although MS has deprived me of many things, it can't rob me of my unrelenting determination to help ensure science keeps moving forward toward better treatments and what I want most, a cure. To know that other people are willing to help me meet that goal is truly touching."
For more information on the Jake For Jake Golf Marathon, please contact Jake Lustig. For more information on the National MS Society, Connecticut Chapter, visit ctfightsMS.org.