A Richland Township family is one of many that will benefit from a Jan. 26 rummage sale sponsored by Chabad of Fox Chapel to benefit families in the Jewish community affected by ALS.
Stanley Nadulek’s wife, Sheree Goldberg Nadulek, was diagnosed with ALS in 2012, after several months of unexplained falls. To date, the disease has progressed to the point where she is unable to speak without the use of a speech device.
She is also unable to walk and uses a power wheelchair; the family has also installed stair lifts in the house.
“Emotionally, it’s been a very challenging and difficult thing to accept,” said Nadulek, who is a practicing psychologist. “It’s a feeling of helplessness and powerlessness over the situation.”
ALS (amyotrophic lateral sclerosis), commonly known as Lou Gehrig’s disease, is a degenerative and progressive motor neuron disease that leads to a gradual breakdown of muscles. Those affected lose the use of their hands, their ability to walk, speak, swallow, and eventually, to breathe.
According to the ALS Association, two in 100,000 people — and at any given time, 30,000 people in the United States — have ALS. There is no cure, and it is usually fatal within 3 to 5 years of diagnosis, though some can live even longer. Most diagnoses occur between the ages of 40 and 70.
While the vast majority of ALS cases are random, a small percentage is hereditary; Sheree’s father died of ALS in 1982.
“In order to deal with this kind of illness, you need more than one caregiver to be able to do the work that is involved,” Nadulek said.
Chabad of Fox Chapel and other families in the Jewish community have already reached out to the family.
“I’ve received help from Chabad many, many times. They have been phenomenal; I can’t say enough about them,” added Nadulek. “They’ve been there from the get-go, providing all kinds of help that we need, sending food over, etc. The congregants have reached out, too; that is very nice and heartfelt.”
Rabbi Ely Rosenfeld, co-director of Chabad of Fox Chapel, said he asked the community for donations to send the Nadulek’s teenage daughter, Ashley, to overnight camp last summer so she could get away for awhile and experience a normal summer.
“It was the easiest fundraising I’ve ever done,” Rosenfeld said. “Within 10 minutes, the money was raised.”
Nadulek said he’s also received a lot of help and support from the ALS Association Western Pennsylvania Chapter, including a loan of assistive devices for Sheree and arranging transportation for doctor’s appointments.
“That is a large help,” he said, “but at times, financially it can become challenging to meet all of the needed costs.”
Hence, the idea of a Chabad-led rummage sale was born to provide financial help for the expenses involved in managing everyday life and for those expenses not covered by insurance.
Every dollar raised will go directly to Jewish families in the community dealing with ALS, Rosenfeld said, and he encouraged those who need help to come forward.
“I didn’t even know about the rummage sale until Rabbi Ely told me,” said Nadulek. “I think it’s absolutely wonderful; it brought tears to my eyes. This is a very extraordinary illness, and my experience has been that people, when they find out about what you are dealing with, they open their heart up to you.”
Another local man, Neil Alexander of O’Hara Township, was diagnosed with ALS in 2011, near his 46th birthday. Alexander and Rosenfeld met through their sons’ baseball team, and the two became friends. In fact, Alexander was invited to light one of the candles at the Fox Chapel menorah lighting this past Chanukah.
“I knew about Lou Gehrig, but didn’t know what ALS was. It wasn’t part of my reality in any way, shape or form,” Rosenfeld said. “Then you meet someone with it and you relate to it in a different way. I’ve since met 15 people in the last year dealing with this challenge.”
According to Alexander, who has experienced a slow progression of the disease, “one problem with researching a cure for ALS is that it manifests itself uniquely in every patient. If you can’t standardize it, you have trouble solving it.”
Nonetheless, both Alexander and Nadulek said that there is some promising stem cell research going on in Jerusalem, leading to optimistic and significant results. The research is supposed to arrive in the United States in early 2014, and the Naduleks have placed Sheree’s name on the clinical trials list in the hope that she will be deemed a qualifying candidate.
Soon after his own diagnosis, Alexander established LiveLikeLou.org, a donor-advised fund of the Pittsburgh Foundation, named after New York Yankees first baseman Lou Gehrig, who was diagnosed with ALS in 1939 and died in 1941. Through outright monetary donations and fundraisers, the organization has raised over $650,000 to date for research, awareness and funds for patients to receive services or specialized equipment.
Ashley Nadulek was a recent recipient of LiveLikeLou’s Iron Horse award, receiving a MacBook Air laptop to help with her studies. Gehrig’s nickname was the Iron Horse.
Chabad will be collecting donations for the rummage sale beginning Jan. 19 through the rest of the week. Sought-
after items include gently used clothing, books, toys, sports equipment, electronics, CDs, DVDs, Judaica, office supplies and housewares, which can be dropped off in plastic bags at the garage outside the Chabad building at 1343 Old Freeport Road. Large furniture items may be dropped off the day of the sale, or arrangements may be made with Chabad for pickup.
The rummage sale, which includes a bake sale run by the teen members of Chabad, will be held on Sunday, Jan. 26, from 10 a.m. to 3 p.m. For a $5 fee, early birds can attend a preview sale from 9 to 10 a.m.
To find out how you can help with the rummage sale, call 412-781-1800.
(Hilary Daninhirsch can be reached at firstname.lastname@example.org.)