October 2012 Volunteer of the Month
“You’re the nicest people I’ve never wanted to meet.” Harvey Mackler puts into the simplest words what so many of our families think. His appreciation for the people at The Greater Philadelphia Chapter is matched by our appreciation for all he and the entire Mackler family have done to help people with ALS live fuller lives with dignity and respect.
For over 12 years, our October Volunteer of the Month has been dedicating his time, his money, and his heart to assisting others with ALS. It is a labor of love for his brother, Scott Mackler, MD, PhD, that has grown into a labor of love for all people living with Lou Gehrig’s Disease.
Scott was diagnosed with ALS in 1999 and, by embracing every new technology to help him communicate and live his life on his terms, he is still leading research in his lab at the University of Pennsylvania. When he was diagnosed, the attitude of Harvey and the rest of the family was that there was nothing they could do to fix ALS on their own, but they could raise money. Since then, they have done that and much more.
And in the process, the whole Mackler family has been an example for all of us to never give up. There is always a new hope around the corner.
Harvey’s involvement with the Chapter began with the luncheon in honor of his brother 12 years ago. That first luncheon helped raise $250,000. The hardest part of raising money was turning Scott into Tiny Tim. He had never wanted to be the focal point in life, but because this would raise money for all people with ALS, he signed up immediately. With the help of his wife Lynn and his sons Alexander and Noah, Scott has used his name and connections ever since to make an impact in the lives of people with ALS.
That first luncheon put the Mackler family in a position to make a big difference in the lives of families living with Lou Gehrig’s Disease. Harvey and Scott met with Ellyn Phillips and Executive Director Jim Pinciotti to see what program they could create that would recognize Scott. At the time, Assistive Technology was a real need and to Scott, it was very meaningful. Today, the Scott A. Mackler, MD, PhD, Assistive Technology Program is known largely for providing iPads for people who cannot communicate, but when the program began, there was no such thing as an iPad.
At the time, Scott had gone through a lot with ALS and saw a real need for a program that would allow people with ALS to lead more normal lives. This included big items like communication devices and smaller things like reading stands that helped turn the pages in a book. The purpose of the program is not to merely provide the latest in technology. Scott Mackler still goes to New York Giant football games, goes out to dinner and movies, and gets his haircut. “My brother leads as normal of a life as possible, and we want to make sure others do the same,” said Harvey. “No patient should ever be turned down for Assistive Technology equipment and it has never happened.”
That first luncheon has evolved into the annual Scott Mackler 5K Run/Walk. As Harvey says, the event is more than about one day, but to celebrate all of the money and support raised throughout the year. It is also about more than one person as Harvey and the family have a dedicated committee who work hard on making it a great event every year.The 13th Annual 5K will be held on Sunday, October 28th at Temple Beth El in Newark, Delaware.
Helping to organize a successful fundraising event for 13 years would be enough to make Harvey Mackler our Volunteer of the Month, but he does so much more. Every year he has a foursome in the annual golf outing and if he can’t make it, he asks the Chapter to invite caregivers because he knows how important they are. As someone always willing to do anything to raise money, he’s even joked that he would sit in a dunk tank, though he hasn’t done that…yet.
Harvey also provides incentive prizes for our outings at very low cost, donates patches for the Lodish Bike Ride and other events, and never says no to helping. If he thinks a request is too much for him, he comes up with a solution. That is because Harvey and the whole Mackler family are connected to the Greater Philadelphia Chapter in a very deep and personal way. That even goes beyond Scott. When Harvey approached the Chapter about a van early on, there was a point where he mentioned Ellyn Phillips to Scott’s wife and she said “was she married to Alan Phillips?” Scott’s wife Lynn, a physical therapist, had treated Alan when he had ALS many years before and now the circle was complete.
For all that he does in Scott’s name to help fight ALS, Harvey still jokes with his brother all of the time. He even offered to start a live auction to press an imaginary eject button on his wheelchair! Harvey can joke like that because when he sees Scott, he doesn’t see a person with ALS, he sees a person. Period. With all that the Mackler family has done for our Chapter, we are making sure that everyone else feels the same way about everyone living with ALS.