June 2014 Volunteer of the Month

Tom Ricci

 

The Navy calls it a “plank owner”, a person who is present at the beginning of a new mission or endeavor . Our June Volunteer of the Month, Tom Ricci, who is also a Navy veteran is proud to refer to himself as a “plank owner”. Tom joined the Chapter’s Visiting Volunteer Program before it even had a name.  

Navy sailors consider their role of plank runner a rare honor and source of pride they carry with them throughout their careers – and so should Tom Ricci.  Long before he knew the term “Visiting Volunteer,” Tome knew about ALS. In 1989, Tom’s wife Lynn was diagnosed with Lou Gehrig’s Disease and he lived with its devastating effects on her body and the challenges the disease presented for his family, in particular his two daughters. Their neighbors in Montgomery County, Pennsylvania were well aware of how ALS was affecting the Ricci family because Lynn was a very well-known community volunteer and worked with many local committees.

Lynn died in 1992, just as the Ricci daughters were in the midst of college at Penn State and Carnegie Mellon University. “I learned at a bereavement group that the most effective cure for grief is time,” said Tom. “My meter started running before Lynn’s death as I started to prepare. After living through ALS, my heart goes out to all the families who become affected.”

 

The experience of ALS on Tom and his family put life into a new perspective. While he recognized and valued the Chapter services on which ALS families depended, he also saw the importance of friendship and companionship as a person’s body suffered the consequences of the disease. Tom had a unique outlook as a husband and father, but also as a 30- year veteran of the Navy, where he saw first- hand how important it was to work together in the face of adversity.

 

Tom’s Navy background had another connection as he took on a new endeavor to support The ALS Association. Before the Visiting Volunteer program even began 14 years ago, Tom started to lend support to Steve Pié, a person with ALS from Delaware who was also a retired Navy Master Chief. While they could  commiserate about the problems associated with ALS, they chose to also  bond over their own experiences in the Navy and their personal friends. Unbeknownst to both men, they had attended a wedding of a mutual friend years before and didn’t meet at that time. The stars just needed time to align.

 

Steve didn’t just live with ALS, he also lived to help others. He volunteered at The ALS Association office, but as his ALS progressed, he couldn’t drive any longer. The Visiting Volunteer program began and Tom provided companionship and support. As Steve’s loving brother and sister-in-law made new living arrangements for him, Tom travelled from King of Prussia, PA all the way to the Rehoboth Beach area to visit Steve, offer a helping hand, and, most importantly, be a friend. We can put a price tag on a new wheelchair or speech device, but you can’t put a price tag on friendship.

While Steve was the first person with ALS who Tom Ricci visited, Tom’s first formal ALS companion was Kevin Glenn. If you’ve followed our Chapter over the years, then you’ve likely seen Kevin at the Holiday Party, at the Walk to Defeat ALS®, speaking to the Phillies, or at any number of Chapter events. Kevin was diagnosed with ALS back in the late 1990’s and Tom soon after began to visit him in Delaware County, PA. While Tom has been able to be a friend and help to Kevin over these years, he says that Kevin has done the same for him, using his smile and great humor to brighten up every visit.

 

“I still refer to Kevin as a kid because he was just in his 30’s when he was diagnosed,” said Tom. “We quickly became really good friends. I’m so happy that he recently got engaged too. He’s an inspiration to everybody he meets.”

 

Being a Visiting Volunteer for so many years for these two individuals would be enough to highlight Tom, but he’s visited with others as well, including another fellow veteran with ALS from Delaware, Keith Canady. With each visit, Tom found that he had so much more in common with these men than a terrible disease. They could bond over sports, family, and lives well lived.

 

“This disease is tough on families and every situation is so different,” Tom recalled. “It becomes a job for the mothers and fathers, brothers and sisters who provide so much care. I’m happy to provide some relief not only to those who have ALS, but to their loved ones as well.”

 

Tom has looked for ways to make things a bit easier for the ALS families. He’s found a lot of enjoyment cooking. While he was visiting Steve, he would make lasagna and Tom was so glad that this simple job preparing food together could provide some relief and happiness.

 

Even though Tom has been active in the fight against ALS for over two decades, he still remembers every family with whom he has interacted with along the way. One of the first families he met was Patti and Billy Lake. Ellyn Phillips learned that Tom had a crude device that would help his wife communicate, a very early example of what would become known as Assistive Technology, and she asked if it might work for Billy. Tom and his friend visited with the Lake family and saw how the disease was impacting not just Billy and Patti, but also their four children, including one who was less than two years old. The Lake family added a whole new perspective to the disease. Tom and Patti became good friends and he witnessed her involvement and devotion to the Billy Lake Memorial ALS Basketball Marathon and Beef and Beer. He  became even more motivated and committed to help others and provide comfort to ALS families.

 

Since he has been along this journey for so many years, Tom is encouraged by the advances in research and new patient care programs. He has seen progress first-hand and understands how new programs and tools positively impact families. But it is the encouragement and hope that he has personally provided to so many others over the years that makes Tom Ricci a deserving “plank owner” and our Volunteer of the Month.

 

 

 


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.