I had the opportunity to write a blog for the Princeton Chapter of SCORE about starting your own non-profit:
We can all recall fantastic stories about how some well-known companies got started - by selling their product from the back of the owner’s car (Nike) or beginning in a garage (Apple), but we rarely hear stories about how non-profit organizations got started or how they’ve grown into major institutions of community service. Just as there are entrepreneurs who are coming up with ideas or products that will become major businesses, there are similar entrepreneurs who start non-profit organizations that help people in their local communities or go on to serve people across the country or around the world.
My non-profit career started 40 years ago at the Leukemia Society of America (now The Leukemia & Lymphoma Society). Like the for-profit companies that started with a product idea, the Society started back in 1949 when a wealthy New York City family was devastated by their 16-year-old son Robbie’s passing just weeks after being diagnosed with leukemia. Robbie’s parents, Rudolph and Annette de Villiers, pooled together $1,000 and started a foundation to encourage the search for a cure. Their foundation evolved into The Leukemia & Lymphoma Society, which has funded $1 billion in research to accelerate treatment and cures for leukemia and all blood cancers.
That non-profit “entrepreneurial” spirit endures today with people like Princeton’s Lisa Patterson, whose daughter was diagnosed in 2021 with Skraban-Deardorff Syndrome, a rare genetic disorder characterized by developmental delay, intellectual disability, seizures, and subtle facial differences. Encouraged by the geneticists who first identified this genetic difference at Children’s Hospital of Philadelphia, Lisa partnered with other talented yet concerned parents to start the Skraban-Deardorff Syndrome Foundation, which held its first in-person Board meeting in Philadelphia this summer, attended by doctors and parents of children with the disease to exchange ideas and plot a path to raise funds to improve Skraban-Deardorff patients’ quality of life.
For Lisa, helping to start this non-profit was daunting but part of her DNA, given her career working for non-profit performing arts organizations. “We were officially incorporated in the state of Pennsylvania on June 1, 2021 after having worked on our business plan and bylaws, but had to wait to do our initial fundraising drive until later that summer, when our non-profit status was approved. We were able to do our first social media fundraising push, which raised over $15,000,” Lisa said. “The advantage of platforms like Facebook is that we attracted awareness and support from around the world within weeks of our founding. Before the existence of social media, it would have taken months or years to reach such a wide audience.” Lisa also cites the importance of volunteer support not only with fundraising but with the day-to-day operations of running a non-profit. “Having additional parents/volunteers provide help and advice with accounting and legal services, and later with database management, was the key to our success!”
When Paul Nardoni passed away from Hodgkin’s Lymphoma in 2001, Paul’s parents, Roseann and Ren, Paul’s sister Renee, and Paul’s wife Ellen established the Paul R. Nardoni Foundation. According to Roseann, while Paul was hospitalized at the University of Pennsylvania Cancer Center, he noticed that the families of cancer patients often spent the night sleeping in an uncomfortable chair, on the floor, or in a makeshift bed in their loved ones’ hospital room. “Paul also saw that there weren’t diversions for patients or their families during their long and sometimes arduous chemotherapy sessions. At that time, the hospital floor where Paul was receiving treatment had just one TV and a VCR that they could wheel to one room at a time, and their library of tapes consisted of one movie: Earth Girls are Easy.”
When Paul passed away, the Nardonis asked that loved ones make a donation to the Foundation in lieu of sending flowers. Their request was shared in those early days of the internet via letters to family and friends and newspaper articles, and raised over $50,000. The funds helped the University of Pennsylvania Cancer Center purchase more TVs and VCRs for use by patients and their families, and for more comfortable sleeping accommodations and small refrigerators for families that stayed with patients in their hospital rooms. Roseann left her job to work full-time for the Foundation. “We were fortunate that Ren was able to support our family through his work but it’s important that people starting non-profits know that it may take months or years before they can bring on staff to work part-time or full-time,” Roseann said.
At one time, the Paul R. Nardoni Foundation funded wishes for cancer patients in the New Jersey area but eventually pivoted to provide grants for patients and their families to purchase essentials such as groceries or rent payments. Since 2001, the Paul R. Nardoni Foundation has raised over $1 million through a variety of events to help families fighting cancer in New Jersey and Florida. The Foundation recently merged into the Somerset Health Care Foundation, the fundraising arm of Robert Wood Johnson University Hospital Somerset, taking some of the daily workload off Roseann. Ellen will be joining the Somerset Health Care Foundation board to preserve the “Carpe Diem” legacy inspired by her late husband. The Nardoni foundation helped fund the hospital’s Paul R. Nardoni Oncology Pavilion (“Paul’s Place”), The Steeplechase Cancer Center, a state-of-the-art outpatient facility.
In 2001, online resources were limited for providing guidance on the steps to take to form a foundation. “That taught us some early lessons,” said Renee Nardoni Flores. “Don’t be afraid to ask for help, particularly in areas where you may not have any experience. Over time, we learned to be realistic about what we could do as a family foundation, and what help we could provide to patients and treatment centers. There were temptations to become a national organization but we wouldn't have been able to manage it. We also learned to stay true to our mission but pivot when the needs of patients changed to wanting to fulfill wishes and needing help with every-day expenses.”
Some take-aways from Lisa’s and the Nardoni family’s experiences:
Follow your passion but develop a clear and concise mission statement and preliminary business plan
Volunteers can help in so many ways besides making a donation, particularly in areas such as operations and marketing, where you might not have the time, experience or know-how
Be prepared to pivot to continue to meet the needs of the people being served by your non-profit
Look to partner with other nonprofits and companies when it will help advance your organization’s mission
For more information about the:
Skraban-Deardorff Syndrome Foundation, visit www.skdeas.org
Paul R. Nardoni Foundation, visit www.paulrnardonifoundation.org