Newsletter 3/11: Erin Santos isn’t backing down
Plus: New timeline on Carolina Theatre renovations; 5 tips as online sports gambling starts; Review of Children's Theatre's 'Catching the Moon'; North Meck woman hoists crockpot in victory
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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.
Today’s supporting sponsor is the event venue at McColl Center. McColl Center is the unique and artistic venue where your company's event, celebration, or social gathering becomes a masterpiece. Schedule a tour and learn more.
Carolina Theatre’s renovation is 85% complete and scheduled to be completed this fall; finished product ‘will be stunning and state of the art’
The end appears to be in sight for the massive restoration project at the historic Carolina Theatre on Tryon Street, according to the head of the Foundation for the Carolinas, which bought the theater for $1 in 2012 and took up the task of restoring it to its original splendor.
In an email to donors on Friday, Foundation for the Carolinas CEO Cathy Bessant said that the restoration “has taken longer than any of us would have hoped” but that it is now 85% complete and scheduled to be finished this fall. The foundation told media outlets toward the end of last year that it was 70% complete.
It’s been under construction since 2017.
In her email to donors, Bessant wrote:
It has been highly complicated and involves many types of firms, from architecture to construction to restoration. That said, having walked the theatre numerous times, I can tell you that when it is completed, it will be stunning and state of the art.
Bessant’s update shared photos of the theater’s interior.
These photos shared by Foundation for the Carolinas show the Carolina Theatre lobby (left) and a view of the stage (right), which are currently under construction.
North Carolina’s 2024 budget passed in October included $7M for the Carolina Theatre’s restoration, and the Charlotte City Council kicked in an additional $2M in November as costs rose. The project was estimated at $88M at the time, the Charlotte Business Journal reported.
The 950-seat theater dates back to 1927 as a vaudeville theater and silent movie house. It fell into disrepair and was vacant for years. —CB
Let the betting on games begin: Online sports wagering starts today at noon; 5 tips
Online sports betting in North Carolina starts today at noon, with eight betting platforms going live and taking wagers.
It’s all being supervised by the N.C. State Lottery Commission, after the General Assembly passed a law last year legalizing the practice.
For some pro tips, we turned to Steve Bittenbender, a writer with BetCarolina.com, which has been closely following sports betting in North Carolina.
Responses were edited for clarity and length:
◼️ How to select a betting platform: “These are fairly alike. You’ll see a slightly different user interface. Some will promote their same-game parlays [linked bets] or other parley bets and pre-made parlays, too. I’m not much of a parlay guy myself. I do play them from time to time, but parlays, especially as you get into parlays with a big number of legs, that becomes pretty much a lottery ticket.”
◼️ Use multiple platforms. “I would look to sign up for a couple of different sportsbooks. If there’s a game I’m interested in, before the game, I’ll check the odds, and I’ll go to the sportsbook that has the best odds. If someone’s looking to put up $100 or $200, you can really maximize that by splitting it up and going with a couple of different sportsbooks and taking advantage of multiple offers.”
◼️ Start with what you know. “If you’re a basketball fan, look to get in with basketball. Whether or not you want to bet on your own team or not, that’s your personal choice. There are pros and cons of that. If you’re someone who lives and dies with every Tar Heel game or every Blue Devil game or every Wolfpack game, you might want to stay away from betting on your team. If a loss isn’t the end of the world, different story.”
◼️ Use good money management. “If you have, say, $100 in an account, don’t look to bet $15 or $20 on a game. Even if you think it’s a big game, and you think that side is going to win, limit yourself to probably about $5 of bets, or 5%, of your account balance on any particular bet. That will help keep you in the game longer.”
◼️ Keep in mind that most people don’t win big. “People see the tweets that the sportsbooks put out, where someone had a $1 bet and turned it into $10,000 or whatever. You don’t see how many others missed out. This is not something where people are going to get rich quick. It’s a way to enjoy the sport. It's a way to enhance your experience watching the sport. And hopefully, it’s a way for you to make a little bit of money.”
—TM
Related Ledger article:
“N.C. gamblers lured with free sports bets” (March 4)
North Meck was cookin’ in basketball playoff upset over Myers Park; fan hoists crockpot
A North Mecklenburg High fan brought a crockpot to Friday night’s basketball playoff game at Myers Park High and held it up prominently in the second half as North Meck cruised to an upset victory. It apparently is a symbol that means the team is “cookin’.” Because of the camera angle on the TV broadcast, the crockpot was hard to miss. Comments on social media included “Whoever this is with the crockpot, you win the internet today”; “They cookin’ man! Let them cook!!” and “I just want to know how she got the crockpot through security.” North Meck beat nationally ranked Myers Park 79-63 to advance to the state semifinals.
🎭 Review: 'Moon’ rises high at Children’s Theatre of Charlotte
Ledger arts critic Lawrence Toppman attended Saturday’s performance of “Catching the Moon: The Story of a Young Girl’s Baseball Dream,” which runs through March 24 at Children’s Theatre of Charlotte.
In his review for The Ledger, Larry writes:
The entire cast brings Nichole Jackson’s lines and the songs she wrote with composer Tyrone L. Robinson to vivid life. But the show, based on a 2005 book by Crystal Hubbard, rests mostly on the sturdy shoulders of the title character, Minnesota middle schooler Marcenia Lyle. Watching radiantly irrepressible Kayla Simone Ferguson, who’s seldom offstage for more than two minutes of the hour-long show, you really believe this girl could rise like a Stone.
That would be Toni Stone, the name Marcenia Lyle Stone used as the first woman to play for a major league professional baseball team. Stone barnstormed for years, playing for American Legion and minor league teams before breaking into the Negro Leagues for two years in the early 1950s. History has not forgotten her, even if most fans have: You’ll find her at the National Baseball Hall of Fame.
Check out Toppman’s full review, with information if you want to go:
You might be interested in these Charlotte events
Events submitted by readers to The Ledger’s events board:
WEDNESDAY: Wednesday Night Live: Jessica Macks, 5-9 p.m., Mint Museum Uptown. Jessica Macks and her band perform songs from around the world in response to the exhibition “Craft Across Continents.” Performance begins at 6:45 p.m. Galleries open late! Cash bar. Free event.
MARCH 21: Charlotte Area Chamber Business Expo 2024, 10 a.m. to 4 p.m. Join us for the highly anticipated Charlotte Area Chamber Business Expo 2024, where local and regional business professionals will converge to forge connections, expand their networks and drive business growth. This premier event presents an unparalleled opportunity to showcase your company, brand and products to a captive audience of potential partners, clients and investors. Free to attend; booth registration $500 for members, $750 for nonmembers, use Ledger discount code “ledger2024” for $550 registration.
APRIL 2-4: 2024 Teen Leadership Summit: Spring Into Action, 8 a.m. - 6 p.m., Mahlon Adams Pavilion at Freedom Park. Hosted by Teen Health Connection, this three-day event is an amazing opportunity for Charlotte teens (9th-12th grade) to attend empowering workshops, gain leadership skills, connect with other teens, and hear from motivational speakers. This event spans the course of 3 days (April 2, 2024 - April 4, 2024) from 8:00 a.m. - 6:00 p.m. each day. $25.
◼️ Check out the full Ledger events board.
➡️ List your event on the Ledger events board.
In brief:
2 South Meck students killed in crash: Two South Mecklenburg High students were killed in a wreck on Friday morning. Seniors Kaia Hodge and Jada Cousins died at the scene of the crash, off Tyvola Road near Old Pineville Road at around 7 a.m. (WSOC)
New details on Jaiyeoba’s exit from Greensboro: Charlotte’s former planning director, Taiwo Jaiyeoba, resigned as the city manager of Greensboro last week after internal reports indicated that he violated Greensboro’s sexual harassment policy, according to two senior city employees who spoke to Triad public radio station WFDD. The inquiry “found Jaiyeoba sent inappropriate messages of a sexual nature to a female employee,” the station reported, citing the anonymous city workers.
Franchisee group sues Bojangles over marketing fees: A group representing 4/5 of Bojangles’ franchisees is suing the Charlotte-based chicken chain, saying that it stopped providing information about how it is spending money that franchise operators contribute toward marketing. Bojangles said it couldn’t comment on the lawsuit but that it is “committed to working shoulder to shoulder” with its franchisees. (Restaurant Business)
Pat Cotham on election defeat: Democratic county commissioner Pat Cotham, asked in an interview whether her daughter Tricia Cotham’s switch to the Republican Party led to her defeat last week, said that “everybody seems to feel like they’re an expert on my daughter and myself” and that she has faced “pushback for a long time” from some Democrats. She added: “I didn’t take an oath to the Democratic Party when I was sworn in. I took an oath to the Constitution.” She said low voter turnout was also a factor. (Observer)
Spring festivals: Charlotte magazine has rounded up 29 Charlotte-area festivals taking place this spring, spanning food, drink and music. (Charlotte magazine)
Beer from wastewater: Charlotte’s Town Brewing has partnered with Charlotte Water and water treatment company Xylem to produce a beer called “Renew Brew” made from recycled wastewater. WSOC’s Joe Bruno reported that the beer “is delicious.” It won an award at a recent brewing festival.
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Executive editor: Tony Mecia; Managing editor: Cristina Bolling; Staff writer: Lindsey Banks; Business manager: Brie Chrisman, BC Creative