As the CEO of New Concepts for Living, Steve Setteducati dedicates his life to advocating and providing services and support for adults with intellectual or developmental disabilities (I/DD).
Now, Setteducati is in dire need of support himself. About a year and a half ago, he learned that his kidneys were no longer functioning properly and he would need a kidney transplant.
The former Emerson mayor, who served from 2003 through 2006, is feeling the effects of his declining kidneys, with severe fatigue and other debilitating symptoms. He suffers from focal global glomerulosclerosis with tubular atrophy, interstitial fibrosis and arteriolosclerosis. That condition has brought him to the cusp of dialysis and placed him on a fast timeline to find a suitable transplant match. His family also issued a public appeal with a recent Facebook post shared to the New Concepts for Living page.
“I’ve been looking for a living donor for a while, but I really was not at the point where I needed to transplant right away,” he said. “But now, I’m very close to needing dialysis or a new kidney.”
The good news is that Setteducati has the common blood type A, but he needs a perfect match which can be determined through blood and tissue typing, crossmatching for positive immunity responses, according to the National Kidney Foundation.
“NCFL put out an appeal at the beginning of the fall last year and about 20 employees volunteered, but the transplant centers won’t consider them as donors because they work for me,” Setteducati said. “I was just so floored that so many people volunteered. That made me very emotional, and I don’t get emotional easily.”
Donor agencies must follow strict ethical and medical rules when evaluating potential donors to ensure that they are completely voluntary. Under federal law, donors are never paid and it is illegal to receive money or gifts in exchange for a donation, according to the National Kidney Foundation.
Other than highlighting his love and gratitude for his family, including his wife, Martha of 37 years as well as his two grown sons and daughter in law, Setteducati said that he is immensely proud of the work he leads at New Concepts for Living. He loves the population the nonprofit agency serves, and it gives him joy to be able to give families peace of mind knowing their loved ones will be taken care of with dignity, respect and proper support for the rest of their lives.
NCFL has nearly 500 employees, who serve about 215 clients and is growing rapidly under his leadership. NCFL owns and operates 22 community residences in Bergen County. In addition, the agency operates an 81,500 square-foot Achievement Center, which houses a full-time day program on Route 17 in Paramus, plus a smaller center in Rochelle Park. Plans are underway for more community residences and 15 apartments later this year.
This Achievement Center, considered by many special needs advocates as one of the best in the nation, features three distinct specialized day programs for high-need, low-need and medically fragile individuals. Services include physical, occupational and speech therapies, nursing and behavioral supports, sensory rooms and ample program and recreational spaces, as well as a robust calendar of community outings and social activities.
“Many families come to us in crisis, and we are able to transform their lives by caring for their son, daughter, or sibling, giving them immeasurable relief knowing that their loved one is in good hands and removing the worry about an uncertain future. Along with the plethora of significant challenges parents face while raising a child with I/DD, above all else they worry about the future when they can no longer care for their special child. When NCFL accepts a new family member into one of our homes, few things in life give me more pleasure than telling their parents that they don’t have to worry anymore, we got it from here,” Setteducati said.
Setteducati has helped hundreds of individuals and now hopes someone will help him so he can continue his mission to serve the I/DD community.
The National Kidney Foundation offers information and questions to ask about becoming a living donor at https://www.kidney.org/kidney-topics/becoming-living-donor.
To consider becoming a match for Setteducati, call NYU Langone Transplant Institute at (212) 263-8134 or Cooperman Barnabas Medical Center’s The Living Donor Institute in Livingston at (973) 322-5938.
