The Activists

For people touched by disease and death, tragedy often leads to triumph. Meet a few who have dedicated themselves to helping others.

It wasn’t until months after his wife Kelly Heinz-Grundner had died of brain cancer in 2004 that Chris Grundner first realized he needed a logo for the foundation he had begun in Kelly’s name and memory.

“I remember thinking, ‘I have a new foundation, but I don’t have a logo,’” says Grundner, executive director of The Kelly Heinz-Grundner Brain Tumor Foundation in Wilmington. “It was then I looked up at the ceiling and saw a dragonfly buzzing around near the ceiling fan.” A dragonfly’s wings are green and blue, Kelly’s favorite colors. A graphic identity, now tied to a new foundation, had taken flight above him.

Grundner’s way of honoring his late wife is the same tribute of tireless dedication seen throughout Delaware, where a growing contingent of families, couples and individuals are taking their private struggle with illnesses and, in an effort to help others, making their stories known to everyone.
“These are people who have a passion to correct the wrong that’s been done to their families, so they go out and try to educate and support other families,” says Fred C. Sears II, president and CEO for the Delaware Community Foundation. “When you’ve lost another one that close, the loss can be devastating. By bringing their story to others, they’re saying, ‘Yes, it is overwhelming, but we’re here to help others through it.’”

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Now in its 20th year, Delaware Community Foundation manages nearly 900 charitable funds and makes grants to organizations across the First State, including health organizations. Sears can count many families and individuals in the community who have gone to the foundation in search of ideas for establishing scholarships and endowments in honor of loved ones who struggle with illness or who have passed on.

“They want to carry on what those who they’ve lost would have done,” Sears says. “They see the fight and spirit within their family member, and they inherit that same fight and spirit. Whether their loved one regains health or not, their passion doesn’t die.”

Page 2: Whatever It Takes | Chris Grunder

 

Chris Grundner honored his wife by starting the Kelly Heinz-Grundner Brain Tumor Foundation. The non-profit has raised close to $1 million for brain tumor education  and awareness. Photograph by Luigi CiuffetelliWhatever It Takes | Chris Grundner

When they first arrived in Wilmington in the late 1990s, the Grundners were a couple on the rise. Chris was a senior vice president at Bank One Card Services (now JP Morgan Chase) and Kelly was a catering manager at Toscana who ran triathlons. They were young, attractive, and had many friends in different social circles.

One day in September 2002, the storybook life ended. After spending six months trying to understand the cause of Kelly’s persistent migraine headaches, she was diagnosed with a primary brain tumor. It was the size of a golf ball.

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Surgery to remove the tumor left Kelly paralyzed on her left side. By then, the neural pathways that controlled her ability to move had gone. To make her functioning leg move, she had to concentrate intensely. She made a vow to walk again on her 30th birthday. And she did, with the help of a cane, in front of 130 guests at Deep Blue restaurant in Wilmington.

Between November 2003 and June 2004, Kelly’s disease was in remission. “She had a determination to beat the disease and told others,” Chris Grundner says. “She even began writing a book that followed her journey, and she really thought the book was going to have a happy ending.”

But the tumor returned. Kelly died in 2004. She was 31.

Grundner immediately resigned from his job at JP Morgan Chase, then spent the first weeks of his mourning thumbing through Kelly’s book, “Whatever It Takes,” an expression she used often during her illness.

“It occurred to me that the book was not going to be enough,” Grundner says. “I had just lost my best friend of 12 years, I had just left my job, and one of the first people I went to was Fred Sears, who said to me, ‘What can I do to help you?’”

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With DCF’s assistance, Grundner stood before an audience of more than 100 at the Delaware Center for Horticulture one year after Kelly’s death to announce formation of the Kelly Heinz-Grundner Brain Tumor Foundation. He has positioned the group as one of Delaware’s leading non-profit organizations. The Kelly Heinz-Grundner Brain Tumor Foundation is the only organization in the nation focused primarily on education and awareness about brain tumors.

To date, the foundation has raised close to $1 million. In September 2008, Grundner launched a three-month Get Your Head in the Game public awareness campaign that was seen on Delaware billboards, bus signs and on a floor display at the Wilmington Amtrak station. In May the foundation raised close to $200,000 with an awareness walk in Wilmington that drew 2,800 participants and 11 major sponsors.

“I used to believe that we were defined by our jobs,” Grundner says. “I now know that who we are defines what we do for a living. I am a servant.”

In many ways, without even writing a word, Grundner has given his late wife’s book the happy ending she desperately hoped for. He and his new wife, Susan, who was a close friend of Kelly’s, live in Landenberg with their son, Cooper. The little boy has a middle name: Kelly.
 

Page 3: A New Foundation |  Denni Ferrera

 

Denni Ferrara began the Leukemia Research Foundation of Delaware in 2007. In its first two years, the foundation raised $400,000 for research rooms, therapy centers and bedsides. Photograph by Luigi CiuffetelliA New Foundation |  Denni Ferrera

What Denni Ferrara saw in the hallways and patient rooms of St. Jude Children’s Research Hospital in Memphis, Tennessee, were stories of hope and need.

Ferrara visited St. Jude in April to make an initial presentation of $150,000, the first of what will eventually total $1 million on behalf of The Leukemia Research Foundation of Delaware, an organization she began in 2007. The money she raised will go right to research rooms, therapy centers and bedsides.

It was never meant to end up like this. The diminutive mother of four was not supposed to begin her own foundation and raise more than $400,000 in its first two years, but then again, she wasn’t expecting that her daughter Natalia, now 15, would be stricken with leukemia 11 years ago.

“When Natalia was going through treatment at the A.I. Children’s Hospital, I was busy caring for her,” Ferrara says. “When she became healthy again, I knew I wanted to give back.”

Soon after, Ferrara became a volunteer with the Leukemia and Lymphoma Society of Delaware, chairing the group’s annual fundraising gala for several years while serving on the board of directors. With her new foundation now in its second year, she and a small group of volunteers coordinate fundraising balls, golf tournaments, and special engagements throughout the year to increase awareness of leukemia.

Now 15, Natalie is a student at the College School at the University of Delaware. She plays lacrosse and is about to earn a black belt in karate.

“I feel so strongly with doing something because my daughter was lucky enough to walk out of A.I. healthy and happy,” Ferrara says. “When you’ve been faced with the illness of your own child, it changes you. The focus is on us making the difference and helping get funds to continue the work, and we can be a tiny part of it.”

The money raised is already at work. During a recent gala, a doctor told Ferrara the foundation’s contributions went directly to enabling a 27-year-old man to receive a bone marrow transplant. 
 

 Page 4: Preserving Memories | Kim McCullough

 

Kim McCullough launched the KENTucky Derby for Melanoma Research Foundation in honor of her late husband in 2006. In May the fourth annual event raised more than $60,000 for research.Preserving Memories | Kim McCullough

Emily McCullough, now 4, was five months old when her father Kent died in February 2006 from the form of skin cancer known as melanoma. She has no memories of her father, but she likes when her mother Kim tells her that her daddy would lie on the floor with her and teach her how to roll. Son Quinn, now 6, retains some memory of riding on the lawnmower on his father’s lap.

For Kim, the moments her children remember about their father would not end there.

“I didn’t want it to be a situation where I relied on just me to show pictures of Kent to the kids,” says Kim, a former resident of Succasunna, New Jersey, who moved with her family to Rehoboth Beach in 2007. “There was never a moment in my mind when I thought I wouldn’t do something.”

For most of his life, wherever there was a party, whether it was in Dewey Beach, Rehoboth or his fraternity house at the University of Delaware, Kent McCullough was usually the life of it. So in honor of her husband’s penchant for fun, Kim decided to throw an annual party for him.

The KENTucky Derby for Melanoma Research Foundation, held each year at the Northbeach Restaurant and Bayside Bar in Dewey Beach since 2006, is the main fundraiser for Mela-no-more, which Kim has led for the past four years.

Year after year, the event, always held on the day of the Kentucky Derby—an event Kent loved—draws hundreds and raises more than $50,000, which enables the foundation to make a grant in Kent’s name to the American Melanoma Foundation.

In May the fourth annual KENTucky Derby raised more $60,000 for research and drew over 300 people, including more than 40 of Kent’s fraternity brothers, who flew in from all over the country.

“My mother walked in with Quinn and Emily with tears in her eyes,” Kim says. “She told me that Quinn saw all of his father’s fraternity buddies and said, ‘Daddy had a lot of friends, didn’t he?’”
 

Page 5: The Power of a Public Journey | Cindy and Gordon DelGiorno

 

Cindy and Gordon DelGiorno have worked to raise awareness of breast cancer by launching a statewide tour of events and fundraisers. Photograph by Luigi CiuffetelliThe Power of a Public Journey | Cindy and Gordon DelGiorno

Outside the Little Church of the Brandywine in Wilmington, on her wedding day in October 2007, Cindy DelGiorno’s long black hair hung over the latticework of her dress, against the backdrop of autumn along the creek. During the reception, she and her husband, Gordon, danced to “Every Little Thing She Does Is Magic.”

Though no one talked about Cindy’s diagnosis of breast cancer, which included a malignant tumor, the news hung over the ceremony like a dark cloud. Weeks later the couple began the torturous journey of chemotherapy.

“I’ll never forget the drive home after the surgery,” Cindy says. “I was talking with the surgeon on the phone, and he gave me the diagnosis, and I began to write down this absolute vortex of information he was giving me. Then I went online for more information and began to sob for days, knowing that I was going to be married in a few months.”

During her year-long ordeal, which involved six cycles of chemotherapy every three weeks, Cindy leaned on her “Chemo Squad,” made up of her mother, sister, friends and family, who traveled great distances to drive her to medical appointments and provide inspiration.

Along the way, Cindy, a teacher at A.I. duPont High School, as well as a yoga and wellness instructor, and Gordon, a well-known local filmmaker who has shot two films in Delaware, decided that they would use their social standing to raise awareness of breast cancer by making Cindy’s journey a public one.

“There are a lot of questions that families going through cancer ask, and once we became more educated and got these answers, we began to grasp more hope,” Gordon says. “We felt that once Cindy got through her treatments, we knew we had to do this. We’re private people, but we needed to go public and help the misinformed get the right answers.”

Allied with the Delaware Breast Cancer Coalition, Cindy and Gordon began an exhaustive tour of events and fundraisers that combined the need for awareness with Gordon’s flair for the humorous. They organized a pub crawl in Dewey Beach, a Hookers and Hackers golf tournament, the annual Bad Hair contest at Sugarfoot Fine Foods in Wilmington, a Toast to the Tatas event in Wilmington, a Festival of Shorts film festival at Theatre N and numerous other breast cancer awareness activities throughout the state.

“I never looked at us as the poster couple for breast cancer,” Cindy says. “I realized I had the power to make my illness more real to people instead of just encouraging people to wear things that are pink.”

The letters NED are the three most beautiful letters in Cindy’s life. They stand for the current state of her health: no evidence of disease. Though her diagnosis suggests a healthy future, she is still dedicated to increasing awareness of breast cancer.

A mentor at the Helen F. Graham Cancer Center of Christiana Hospital, Cindy is working with a 28-year-old woman, who is getting married in June.

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