The ALS Ice Bucket Challenge is slowly receding into the same fuzzy corner of our collective memory as the Livestrong bracelet and the Kony 2012 movement, but for Issie Rabinowitz and his family in their humble home on Robin Lane in Westboro, life goes on the same as it did before the disease they have been living with for six years suddenly made headlines across the globe.
Much has been said about the merits of dumping cold water on yourself, where the money goes and what charities are most deserving of public funding. Rabinowitz has seen it all unfold from his living room on his computer screen. His own thoughts are much simpler and go straight to the heart of the issue.
“I think it’s very good because ALS is an awful disease, though there are not many people who have it,” says Rabinowitz. “So the big pharmaceutical companies do not have an incentive to invest a lot; so the fact that there is attention brought to it is very good.”
Though his body is mostly paralyzed, Rabinowitz can still speak well. His voice now comes through a slow and deep drawl, far from his days reading Torah at synagogue. Not that long ago he made the two-hour walk to Hillel Lodge every week for services.
Whether the attention has been tainted by so-called “slacktivism” or not, the fact that attention is being paid is key. ALS can be easy to overlook, as only about 3,000 people in Canada suffer from the condition. Not only is there no cure for ALS, there is still no viable treatment for its symptoms. “Many treatments are experiments, and most of the experiments fail,” says Rabinowitz. “It’s not a simple disease.”
ALS, which is also known as Lou Gehrig’s Disease, is a progressive neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed. One of the complexities of ALS is how it progresses differently for different people. Rabinowitz has lived long past the time his doctors expected and he remains confidently optimistic for his future. He considers himself very lucky. Issie and his wife Abigale have five children, their family is large and full of love. Abigale is away at the moment, welcoming the couple’s newest grandchildren into the world, twin boys born to Issie’s oldest son. In a short time the twins will be coming to meet their grandfather.
Being at home has also allowed Rabinowitz the ability to continue to work, to give back to the world as he has always done. In addition to keeping up his job as a chartered accountant, Rabinowitz runs an online school that provides free courses to people all across the world. “I believe that education, especially learning for a job, can be hard to find for many people in the world,” says Rabinowitz. The NewStart Institute at educationfree.org is a project he started shortly before he became ill. The courses available provide simple training in computer-based fields, accounting, basic web design, office administration and more. The graduates often hail from countries such as Afghanistan, Nigeria and Pakistan, where education of any kind is often inaccessible or unaffordable.
In NewStart, Rabinowitz’s legacy as a kind soul can live on, while in spite of a powerful will to stick around, his body will soon fade away. If anything can come from the new awareness raised towards ALS, it’s Rabinowitz’s hope that through increased research and resources more people who are afflicted with the disease can have the same opportunity that he has had for longevity and joy in his final years.
“While I don’t think there will be an immediate cure, hopefully they will find better ways to make people’s lives more long term.”