Erin Santos isn't backing down
The Isabella Santos Foundation's founder finds new energy as the cancer-research charity heads in a more ambitious direction
The following article appeared in the March 11, 2024, edition of The Charlotte Ledger, an e-newsletter with smart and original local news for Charlotte. We offer free and paid subscription plans. More info here.
After an exhausting 16+ years, the founder of the Isabella Santos Foundation needed to make a change. Instead of folding, she’s planning a big expansion.
Erin Santos of the Isabella Santos Foundation on a tour of the UNC Children’s Research Institute with Dr. Ian Davis, a pediatric hematologist and oncologist. The well-known Charlotte foundation is planning to expand its reach beyond Charlotte to work with 10 hospitals including UNC Chapel Hill, Duke and Wake Forest. (Photo courtesy of the Isabella Santos Foundation)
By Tony Mecia
There came a point last summer when Erin Santos thought about calling it quits.
For the previous 16 years, she had led the Isabella Santos Foundation, named after her daughter, who died of a rare cancer in 2012 at age 7. Santos was tired. The foundation’s small staff felt burned out. Like the thousands of people who had turned out to the dozens of events over the years, they loved the mission of raising money for pediatric cancer research. But fundraising had become a chore.
Finding new donors was challenging. Dealing with some of them was frustrating. The events — the galas and golf tournaments, bake sales and brunches — felt stale. And attending funerals of young cancer patients never grew easier.
“The trajectory wasn’t going like it used to,” Santos recalled recently, in a candid conversation over coffee. “People just get bored with charities. You have to constantly keep things fresh and have new events and new everything. To think of a brand new event after 16 years — I mean, I was absolutely exhausted.”
It’s common for nonprofits like ISF, which are so closely tied to a family’s tragic experience, to start strong and be powered by passion. It’s also common for that energy to wane over time, as memories fade and supporters move on to newer projects. That’s where Santos found herself last July. Her new husband told her she needed to make a change.
But instead of hanging it up and declaring victory at raising millions over the years, Santos is now leading ISF in a different direction. She’s retooling her staff and has hired experienced professionals in areas like marketing and fundraising to make the nonprofit run better.
And next week, Santos is planning to announce a dramatic expansion of the foundation: Instead of focusing only on Charlotte, where it has supported cancer research at Atrium Health’s Levine Children’s Hospital, ISF will extend its reach to more hospitals in the Carolinas. That will open the door to better serve children with cancer at hospitals closer to their homes, while also expanding the universe of potential donors. The charity plans to announce the details at a “speakeasy soiree” on March 22.
Asked why she chose that more difficult path, Santos pauses, and tears start welling in her eyes: “Because I still don’t think that what Isabella wanted me to do, I did — to make things change permanently. … If this is successful, it’s going to change everything for everybody, forever. And who else is doing that?”
The need for philanthropy
Although cancer can be diagnosed at any age, it is far more common among older adults. The median age of a cancer diagnosis is 66, according to the National Cancer Institute. People 60 and up are 40 times more likely to be diagnosed with cancer than people under 20.
That also means that the bulk of federal cancer research funding goes toward those more common cancers. Just 3%-4% of federal cancer dollars is directed to children’s cancers, said Dr. Thomas Russell, a pediatric oncologist who is the director of the rare and solid tumor group at Levine Children’s Hospital.
“The reality is that we have to rely on philanthropy and foundations to really support various aspects of our care model,” he said. While some charities work to help the families of young cancer patients, ISF has focused on supporting research and clinical trials, the studies by doctors that can help devise more effective treatments.
Since its inception in 2007, ISF has donated more than $8M, much of it coming from people and companies in the Charlotte area who attend or sponsor charity events. Most of the money has gone to the Atrium Health Foundation, with the balance going to national trials and patient and family care.
“What impresses me most with Erin and ISF is their vision is really aligned with our vision — specifically my vision as an oncologist — to make sure that the next generation has better treatment options than the current generation,” Russell said.
Many organizations like ISF start as fundraisers for a family or for a hospital. Most such nonprofits last for only a few years at the most, although there are notable exceptions — like the Susan G. Komen Breast Cancer Foundation, which started in 1982 in memory of a 36-year-old who succumbed to breast cancer. Russell says medical fundraising organizations typically “have a beginning and an end” and “just don’t have that lasting power.”
With the help of philanthropy, doctors have made advances in pediatric cancer care. Every type of cancer is different, but for the type of cancer Isabella had — an advanced neuroblastoma, which starts in tissue cells — the survival rate has increased from about 30%-40% a decade ago to about 50% today, with new treatment options, Russell said.
Mother and businesswoman
Laura Fedak of Laurinburg, a town of 15,000 two hours east of Charlotte, forged a kinship with Santos and ISF after her daughter, Madison, was diagnosed with a rare cancer in 2018. Foundation staffers sat with her while her daughter underwent surgery, and when the treatment options ran out, ISF organized a big spread of Madison’s favorite food in the waiting area. “They fed us, and they took care of us,” Fedak recalls.
After Madison died in 2019 at age 7, Fedak turned to Santos for advice on starting a charity to support cancer research.
“She was very honest,” Fedak said. “She said, ‘People are going to support you in the beginning, because it’s new and it’s raw and it’s real. But don’t get your feelings hurt when people back off and you don’t get as much giving as you used to.’” Fedak founded a nonprofit called Live Like Madison.
Parents like Fedak and Santos who raise money for a cause have to assume dual roles that might seem incompatible: on the one hand, a grieving cancer mom whose life has been shattered; on the other hand, a driven businesswoman doing the hard work of running a sophisticated fundraising operation.
Humans are complex, though. Santos is both. In an hour-long conversation, she can both ask for tissues while recalling Isabella, then a few minutes later vent frustration with donors who have reneged on pledges and scrutinized the foundation’s expenses in ways she considers unfair. Some, she says, expect the results of a professional business but object to common business expenses like Christmas parties, staff development and competitive salaries.
“Everyone’s like, ‘How much of my dollar is going to overhead?’ and when I say, ‘30%, because I’m bringing in the best people,’ they’re like, ‘Oh,’” she says. “But I’m like, how are you supposed to do this otherwise? Just have moms that drop off at preschool and come and volunteer? Because then I’ll raise $250,000 a year.”
The foundation’s publicly available tax forms show that in 2022, the last year available, ISF took in nearly $2.3M in revenue. It gave out grants totaling more than $1.4M, mostly to the Atrium Health Foundation, and spent about $800,000 on putting on events, salaries and other business expenses. ISF typically has five or six employees.
From ‘sharp knife’ to ‘butter knife’
Santos’ admirers interviewed for this article described her as a loyal friend, a visionary and someone you want in your corner. They also called her “a force of nature,” “fearless,” “a hard woman to say no to” and “a badass.” She acknowledges she can be “abrasive.”
She and her first husband divorced not long after Isabella’s death, but in 2022, she remarried. She met her new husband, Blair Primis, when she asked him for money in his former position as head of marketing for OrthoCarolina, she said on a recent podcast called “Grab Life by the Goals.”
Today, she says they’re soul mates, they’re both stubborn and have dry senses of humor and are “the same person, we just have different anatomy.” She now uses the last name Santos-Primis.
At age 46, she seems to be embracing who she is, and coming to terms with the tragedies and triumphs that have shaped her. She says she has mellowed over the years. She used to be a “sharp knife,” she says, who was “coming at everybody so hard and so aggressive.” Now, her new husband tells her she’s more like a “butter knife” — “I could get somebody killed if I stabbed them enough, but it’s going to take a lot. I’ve softened my edges, which needed to happen.”
Asked if continuing to pour her life into the foundation is a way of channeling her grief, she says it’s a demanding and draining job. She says she recently started counseling for the first time since Isabella’s death, and the counselor determined she rated high for post-traumatic stress disorder (PTSD). That’s likely the result of reliving so regularly her experience with Isabella, who would have turned 19 on Saturday. She said: “I just have to figure out how to get to a point where I’m able to not have it affect everything, because talking about her every day is tough.”
As for the foundation’s expansion, she didn’t want to give too much away ahead of the organization’s March 22 “Speakeasy Soiree,” where it plans to officially announce the move. The website for the event, to be held at Camp North End, says it involves connecting 10 children’s hospitals in North and South Carolina and enabling them to cooperate on clinical trials, which should speed the development of new treatments and allow young cancer patients to participate closer to where they live.
She said she has never been more excited about her job. In an Instagram post on Saturday, she wrote that she is “beyond happy,” with a lot to be grateful for, though she continues to miss Isabella.
Supporters say they’re enthusiastic about the expansion. Lisa Mehta, who first heard about ISF three years ago and has helped organize fundraising brunches and other events, says it will help more children beyond Charlotte and find treatments and cures faster. She said she admires Santos’ dedication.
“She has been steadfast for so long,” Mehta said. “She has persevered. She has taken what most people could be broken by and made it her purpose.”
Tony Mecia is The Ledger’s executive editor. Reach him at tony@cltledger.com.
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Executive editor: Tony Mecia; Managing editor: Cristina Bolling; Staff writer: Lindsey Banks; Business manager: Brie Chrisman