More than 1,100 people attended a celebration of Penny Doerge’s life last Nov. 18 at St. John’s of Lattingtown Episcopal Church. Most had not known how ill she was, because the 16-year-old, who died on Nov. 10 of a brain tumor, lived in the moment, and the treatments she received for neurofibromatosis, or NF, with which she was diagnosed at just 4 months old and that ultimately led to her death, were mere inconveniences for Penny.
NF, a common genetic disorder, causes the growth of tumors on nerve pathways anywhere in the body. More common than cystic fibrosis, NF, which has been historically underfunded, can be inherited or result from a spontaneous gene mutation. There is currently no cure.
Despite the likelihood of a bleak future, Penny lived a full life in Glen Cove with her friends; her parents, Kate and Chad, and her brothers, Frankie and Henry.
“Ever since Penny was a little girl, with her big, bright eyes, kind smile and bouncing curls, we knew she was very special,” Kate said at her daughter’s memorial. “After Penny’s first surgery, she would commando-crawl in her bright pink body cast across the room with a big smile and the determination of a little warrior that we would watch for so many years to come.”
In her short life, Penny underwent 15 surgeries on her brain and leg. She was a talented artist, a fashionista, a world traveler and a social media influencer who loved spending time on TikTok with friends, paddleboarding and dancing. She had an infectious giggle, and loved pulling pranks on her brothers.
“Even when she was diagnosed with the brain tumor, we never defined her as being sick,” Kate said. “At the celebration of her life, we realized the impact she had on others. That was Friday. On Monday morning Chad and I looked at each other and said, ‘We need to spread Penny’s story and positivity to help other families.’”
In December, the couple founded Penny’s Flight, a foundation committed to spreading awareness of NF, advancing research to find a cure and keeping Penny’s message of positivity alive.
Over the past four months, Kate and Chad have been busy. They were interviewed by Norah O’Donnell on “CBS Evening News” in December, and Kate wrote an article for Oprah Winfrey’s digital publication, “Oprah Daily,” in January. The foundation received a percentage of the sales from fashion designer Veronica Beard’s nationwide in-store shopping event in March.
Children have done their part to support the foundation. There were pop-up fundraisers across the country the day the Doerges launched the foundation, and efforts to spread awareness of NF and raise money for Penny’s Flight have continued ever since.
“The kids initiate it all on their own, and we send them a pop-up box and they sell bracelets and stickers and other foundation merch to raise funds,” Kate said. “But most importantly, they spread Penny’s life lessons and raise awareness for NF.”
The Doerges held their first pop-up this winter at the Beaver Dam Skating Club in Locust Valley. Coincidentally, comedian Jimmy Fallon was there to visit some friends, as was former NFL quarterback Eli Manning, who was watching his son play in a hockey tournament. They stopped by the pop-up to talk to the children where they learned about Penny’s Flight and NF. Fallon and Manning posed for a few photos with the kids, and donated to the foundation.
The Doerges have another appearance planned in May. They will be on NBC’s “Today” to raise awareness of NF, which is fitting, Kate said, because May 17 is Neurofibromatosis Awareness Day.
The foundation has reached out for support locally, too. An event benefiting Penny’s Flight at St. John’s called Angels & Art for a Cause was held on April 19. Artist Anne Neilson came from Charlotte, North Carolina, and brought a selection of works by nine of her top artists, as well as her own works and copies of her latest coffee table book, “The Brushstrokes of Life.” The owner of Anne Neilson Fine Art, she represents more than 60 artists across the country.
Neilson will donate 20 percent of the proceeds from the evening at St. John’s, and her general sales throughout May, to Penny’s Flight.
Her trip to Lattingtown to support the foundation was not accidental. Shortly after Penny died, Kate received a gift from her friend Christina Potter. It was a painting of an angel created by Neilson, and one of her earlier books, “Angels in the Midst.”
“I was so overcome with the beauty of this angel,” Kate said, “I developed a relationship with Anne. She said she wanted to (help at a fundraiser).”
Potter co-chaired the St. John’s fundraiser, and arranged for Neilson’s participation. Angels & Arts for a Cause offered a variety of artwork for sale, some of it focused on butterflies, which Penny loved.
Among the guests were Penny’s close friends, including Lia Koundourakis. “When we were younger, Pen loved to draw a butterfly — rainbows and flowers too,” Koundourakis said. “What I miss most is not having that loyal friend by my side, and her pranks. They were the best. Penny was a very lovable person.”
Chad Doerge said that funds raised by Penny’s Flight were donated during the 2022 annual giving cycle to the Hospital for Special Surgery, in Manhattan, and the Children’s Tumor Foundation, both of which are working to find a cure for NF.
“The reason why people haven’t heard of NF is because it shows up in so many different ways, and some people who have it can live their lives without serious complications,” Chad explained. “NF can be a gateway for other types of tumors, so the focus will be on the tumors instead of NF, which is the cause of them.”
The U.S. Defense Department spends $20 million annually to fund NF research, Chad said, but its focus is late-stage NF. What is needed, he said, is a focus on the early stages of the disease.
While he continues to learn about NF and who can help find a cure, Chad said he remains appreciative of his community. “We always knew we lived in an incredibly supportive community,” he said, “but everyone has shown their true colors.”
The Doerges don’t share any frustration they may be experiencing with the uphill battle they are undertaking, because Penny never did. “From a very early age, Penny would find beauty in imperfection and positivity in the face of any challenge,” Kate said, “and choose faith over fear.”
“Positivity in the face of challenges — it’s something that is very important to the foundation,” Chad explained. “It was how Penny lived her life. She faced challenging conditions and never let it get her down. She is an inspiration to people.”
To learn more about Penny’s Flight or to donate, go to PennysFlight.org.