Warning: Foundation tied to organ transplants may have taken your money

WORCESTER — A Worcester woman feels betrayed by a national foundation that helped families raise money to cover medical expenses, and she has a warning for others who did business with the organization: You, too, may have lost money.

Christina Norris said the National Foundation for Transplants kept thousands of dollars that her family raised to help pay for her 73-year-old mother’s double-lung transplant. She doesn’t see a way that they’ll ever get the money back

“We’re angry,” said Norris, who believes other families in Massachusetts and nationwide were burned by a foundation they trusted. She’s spoken to families in Connecticut and North Carolina who are in the same boat.

“There are thousands (of families) out there, we just have to find them.”

The National Foundation for Transplants shut down this month, citing in an email to the Telegram & Gazette its financial struggles, including a sluggish economy after the COVID-19 pandemic, health care inflation and rising operational costs. A drop in fundraising was also mentioned.

The Massachusetts Attorney General’s office hasn’t received any complaints from residents who feel they lost money due to the foundation’s closing, according to a spokeswoman. Complaints can be filed with the AG’s office online.

Meanwhile, it’s unclear if current and former patients at UMass Memorial Health and St. Vincent Hospital are impacted by the foundation’s closing.

How it all started

Norris’ mother, Donna Sinclair, who lives in Salem, had a double-lung transplant on Dec. 11, 2018, at Massachusetts General Hospital.

The family considered using a GoFundMe page to raise funds to help pay for Sinclair’s medical expenses. Instead, Norris said the family went with the National Foundation for Transplants on the recommendation of the transplant team at MGH that touted the foundation’s decades-long track record.

MGH estimated the family would need $35,000 after Sinclair's surgery to cover various expenses, according to Norris.

The foundation established a personal page for Sinclair on its website and set a $35,000 fundraising goal. That amount is documented in a foundation email Norris shared with the T&G.

"A note about your goal: this is flexible," reads the email. "When setting goals, I like to think about the current needs and expenses at the time of transplant, but I also like to think forward to the year or two post-transplant. It is so much easier to raise money before the transplant happens than it is afterwards. It’s nice to raise a bit more than you’ll need at the time of transplant to give you a bit of safety net."

Papers were signed, said Norris, and it was understood that 97% of funds raised by the family were for Sinclair’s medical expenses. The remaining 3% covered the foundation’s administrative costs.

The family raised $35,000, all of it deposited in Sinclair’s account at the foundation. Funds were drawn by the foundation to cover Sinclair's expenses, including pharmacy co-payments and travel expenses.

“Everthing was handled and dispensed by NFT,” wrote Norris in a Facebook direct message to the T&G.

Who controls $11,000?

When Sinclair received a letter last month that announced the foundation was closing, $11,000 remained in the account. Who controls the balance appears to be in dispute. Norris believes the family is entitled to the money, because the funds were raised for Sinclair’s care.

“If people knew their donations were to a nonprofit organization and not to mom directly, then they never would have given this money,” said Norris. “There wasn’t that much transparency upfront.”

The only stipulation, said Norris, was in the event of her mother's death the family is allotted $1,000 for burial costs. Any remaining balance is retained by the foundation and placed in its general fund.

The foundation said it has “discretionary” control over all money in the account.

“All contributions received by the National Foundation for Transplants were donated for its discretionary use as a nonprofit entity in support of its mission. In this way, we have been able to help as many transplant patients and their families as we could ever hope to be able to.”

Norris consulted with the Massachusetts Bar Association to explore potential legal action, and said she was told by lawyers at the MBA that nonprofits don't have the ability to designate funds to one person.

As for what will happen to the $11,000, the foundation's email was unclear. But it appears all accounts will be drawn down to a zero balance. “Gifts previously made have been utilized for serving transplant patients. There will be no funds remaining at closure.”

Since its inception, the foundation noted it raised $98 million that helped 6,400 people. It also distributed $2 million on average annually in grants over the past 20 years.

“NFT extends its heartfelt gratitude to everyone who has been a part of its journey. The legacy of its mission will endure in the lives it has touched and the hearts it has uplifted.”

Health good, emotional state fragile

Healthwise, Sinclair not only recovered after surgery but is also doing "the best she’s ever been,” said Norris. However, her mother is emotionally floored by the foundation’s closure and what appears to be $11,000 lost that was raised by people who care about her.

“She feels she wants to give up. She feels she came this far for everthing to fall apart,” said Norris.

Sinclair could use the $11,000, because she’s having a hard time paying for expensive medicines to manage her health, said Norris. The foundation's April 8 email that announced closure said it would help families pay their medical bills through the end of April, according to Norris.

That didn't happen, Norris said, because the day after the email, her mother received word from her pharmacy that the National Foundation for Transplants cut off payments.

The family established a GoFundMe to help with the expense of Sinclair's medicines. By Thursday afternoon, $1,280 of the $10,000 goal was raised.

Contact Henry Schwan at henry.schwan@telegram.com. Follow him on X: @henrytelegram.

This article originally appeared on Telegram & Gazette: National Foundation for Transplants folds taking clients' money