In mid-April, when most Americans were enjoying the warming weather and making summer plans, a 41-year-old charity in Memphis, Tennessee with a mission to provide fundraising support to organ transplant patients shut its doors and closed for good.
Here on Cape Ann, Gloucester resident Kathleen “Kathy” Ernest—a 69-year-old grandmother and a double lung transplant survivor who had turned to the National Foundation for Transplants (NFT), considered the charity a godsend.
Going into her 2020 transplant, a hospital case worker recommended Kathy’s family use NFT to raise donations for expenses related to her procedure but not covered by insurance. It was a win-win. Here was a trusted, 41-year-old not-for-profit that offered a platform to raise money that was cheaper than a service like gofundme.com and gave donors a charitable tax benefit. What could go wrong?
“From the very beginning we were told fundraisers were important because treatment had large out of pocket expenses that insurance wouldn’t cover,” said Kathy. Like a specialized $800 “pulmonary function machine,” travel to and from appointments, or prescription medicine co-pays. With weekly appointments and 30 drugs at one point, gas and even with $2 copays it added up, fast.
Kathy’s family went with NFT, and successfully raised $13,000 in donations that NFT retained and managed. Even in the height of COVID, her daughter Bridget was able to organize creative fundraisers, like raffling off homemade themed gift baskets, and host virtual Cornhole tournaments. The donations came in and Kathy and her family felt confident they’d be OK.
But on May 8, when Kathy submitted a claim to reimburse some expenses, NFT rejected it. But then she received an email. It said NFT had closed its doors permanently and Kathy learned what hundreds of other NFT across the country, including four from Massachusetts, had learned. The charity was closed, and their donations were gone.
When pressed, NFT’s explanation was short and not-so-sweet: monies raised by clients legally belonged to the charity, not them, and they were to be used to cover the organization’s expenses.
To add insult to injury, just days later, on May 13, Kathy’s pulmonary fitness test came back and the news wasn’t good. She’d failed for the fourth consecutive time, indicating that her body had started to reject the transplant. She was devastated.
“I came out of the office and I was balling my eyes out,” she said. A nurse who knew Kathy had also just learned about NFT’s closing asked what she was most upset about. “I had to calm down. I realized what upset me more than anything was that I’d failed my PFT test.”
She started focusing on breathing better. And reaching her goal to work out at the Y, leaving the fight with NFT to Bridget, her son Edward (“EF”), and daughter-in-law Monica.
Bridget said now she recognizes the micro-signals from NFT that things may be going wrong. The monthly reports on Kathy’s donation account stopped coming in 2021. Soon after, the web link to monitor the account was changed to one from GoFundMe Charity.
“I would like to know how they can live with themselves knowing this is how they went about it,” said Bridge Ernest. “They knew this was coming. The way they handled it was so inappropriate. There were probably thousands of people affected. It’s terrible.”
The organization has cited financial struggles for its decision, made worse by the COVID-19 pandemic and rising costs of healthcare. But this language wasn’t to be found on its website. Instead, news of its closure reads like a well-planned sunset, with messaging that heralds only its successes.
“Together, we have raised $98 million, including $84 million through peer-to-peer fundraising efforts and impacting more than 6,400 individuals,” NFT’s website reads.
Last Sunday afternoon, more than 100 friends and family showed up at Cape Ann Lanes to make up for what NFT has taken. Kathy who seemed to be energized by all the goodwill in the room. Between proceeds from bowling, raffles and auction items, the Ernest family took in nearly $4,500. Separately, the family has set up a gofundme.com campaign to continue fundraising on social media. That’s a pretty good start.
Bridget is now in touch with other NFT clients and, with them, she is part of a coordinated effort to file complaints with state Attorney General offices to share their experiences in hopes that this won’t happen again.
“There were some patients who hadn’t even gotten their transplants yet, and I really feel for them,” said Bridget. “How do these people (at NFT) get jobs at other nonprofits now, knowing this is what they did?”
As for Kathy, her doctors have placed her on two medications, and it’s helping. Two weeks ago, her PFT test showed progress: her numbers were steady, and hadn’t gotten worse. She’s been on NBC Nightly News, and on WBZ-TV in Boston. And she is cautiously optimistic.
“You have to be positive,” she said.
