Kelly and Vinnie

Kelly Slipakoff has become friends with many people with ALS over the past 15 years through her involvement with The ALS Association. Kelly isn’t a nurse, or a social worker, or a doctor or a staff person with the Greater Philadelphia Chapter. In fact, before she and her husband Al connected with the Chapter so long ago, she had not known anyone with the disease.

Vinnie (front) and her daughter Eva and Kelly Slipakoff

Now, in 2016, Kelly is a bit of a pro herself, though she may humbly disagree with that assessment. She may not have the formal medical training, but Kelly has learned a lot about ALS through her long commitment to volunteering for the Chapter, particularly as one of the very first, and longest serving, Visiting Volunteers (VV).

In 2001, Chapter President Ellyn Phillips talked to staff nurse Gail Houseman about an idea to start a program where volunteers would visit with people with ALS, not as a medical professional, but to provide companionship and help in the home. Having lost her husband to ALS, Ellyn knew how much having a friend meant to an ALS family. Gail is a very good problem solver, and knew that the simplest way to make this idea work was to ask Kelly Slipakoff to be the first official Visiting Volunteer.

That was fifteen years ago. The Chapter was much smaller then and ALS patients did not have the same resources as they do today, but the need for companionship is timeless. Kelly happily took on the role of visiting with someone with ALS and become their special friend who would listen and help. One of the first people with whom she visited, Helene, led to Kelly and Al starting a Walk to Defeat ALS® team. Kelly and Helene developed a strong bond, and when Helene passed away in 2002, her friends in the Wayne, PA business community suggested a fundraising event in the area. That led to a Walk to Defeat ALS®, which Kelly and Al supported from the start. That walk in Wayne would eventually grow to be part of the Greater Philadelphia Walk to Defeat ALS®, which has raised millions of dollars for ALS care and research over the years.

Fast forward to 2016. In the past 15 years Kelly has been a Visiting Volunteer for ten people with ALS and over 100 others have worked with Gail in becoming a “VV”, as Gail calls them. Today, this highly successful program spans the Chapter’s service area. And, now Kelly has a special friend with ALS named Vincenza Grillo. Vincenza is a beautiful Italian name, but friends don’t bother with formalities. When they are together, it’s Vinnie and Kelly.

Kelly and her team at the Walk to Defeat ALS. Kelly walks in honor of all of those people with ALS that she’s helped

Vinnie was diagnosed with ALS about 12 years ago after experiencing increasing stiffness in one leg and then similar symptoms in the other. She went through the usual series of tests and heard experts say that she could have a nerve injury or a herniated disc or something more severe. Eventually she met with Dr. Feinberg, a neurologist at an ALS clinic, and she received the formal diagnosis of ALS. Those letters altered her life and her plans for retirement.

At the time of Vinnie’s diagnosis, she was retired, but very busy in her role caring for her oldest granddaughter. This is where Vinnie and Kelly bond the most. Yes, they both know the severity of ALS and they share other interests as well, but they are also both happiest talking about grandchildren. When the symptoms of ALS get to be too much for Vinnie, she and Kelly have a lot of things to smile about together.

Of course, Vinnie doesn’t just talk to Kelly about her family, though it is the most frequent topic of discussion. They talk about Vinnie’s previous jobs selling designer women’s clothing and working in the Traffic Court. They also talk about her love of visiting Atlantic City, New Jersey, which she has done for many years. In August of 2015, Vinnie, her husband, and her granddaughter had an overnight visit in Atlantic City and spent hours riding up and down the boardwalk. For all of the luxuries that Vinnie has had in her life, the thing she values most is time, especially time with her family, particularly her four grandchildren.

While Kelly and Vinnie talk a lot when they are together, they are busy in other ways too. Their visits almost always include an outing, sometimes to buy groceries or get lunch and sometimes for a doctor or ALS clinic visit. Kelly makes Vinnie’s outings more enjoyable and less stressful.

The ALS Association Greater Philadelphia Chapter has provided Vinnie with many resources for which she is very grateful. She has used the Chapter’s equipment loaner closet, attended research meetings, and attended events like the Holiday Party and Annual Luncheon. Vinnie has special praise for the Mike Kilpatric Van Transportation Program and the always happy and helpful drivers, Thomas and John.

Those services from the Chapter are paid for with fundraising. Things like a wheelchair or professional nursing care come with a price tag. However, quality time with a friend who will listen and be with you when needed is priceless. In her many years volunteering with The Greater Philadelphia Chapter, Kelly has story after story of friends she has made along the way. Each person with ALS has something special about them, whether they had a personal connection to NFL Hall of Famer John Elway (true story) or a kind, loving grandmother named Vinnie who came to America from Italy.

Vinnie and her family at the 2014 Holiday Party with Chapter President

The mission of The ALS Association is to lead the fight to treat and cure ALS, but it is also to provide people with ALS and their families compassionate care and support. It’s a big mission that takes a lot of money and time to accomplish. Kelly and Al Slipakoff are generous supporters of the cause, but for Vinnie and the many others that Kelly has touched over the past 15 years, nothing is more valuable than the time Kelly and Al give. The goal of the Chapter is to end ALS not just because ALS is bad, but because people are good..people like Vinnie who just want to take in the Atlantic City Boardwalk with their grandchildren. Kelly and the Visiting Volunteers are doing their part to make sure that the Vinnie Grillos of the world experience all of the good that they possibly can.

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