The closure of a nonprofit is leaving a Kent family, and potentially many others around the country, under financial stress.
Eric Epstein is diabetic, and the disease has killed his kidneys.
His family says they initially applied to the National Foundation for Transplants (NFT) on the suggestion of hospital social workers to help pay for his kidney transplant, an exorbitant expense even with health insurance.
“We’re really lucky that he got the transplant and it stuck and he’s doing OK with the one kidney right now, but what about the other people? You can’t get on the transplant list until you can prove to hospitals that you can pay for it,” said Epstein’s wife, MaryEllen.
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According to its website, NFT is a nonprofit that supports families with a fundraising consultant who helps organize fundraising campaigns.
On its brochure for potential patients, it touts “that 97% of all donations can be used to pay for transplant-related expenses.”
Over time, loved ones and even strangers donated more than $90,000 to Epstein’s NFT fundraising page.
NBC CT Responds
Then the Epsteins were getting reimbursed by the nonprofit for costs associated with the kidney transplant care.
They say they’ve been trying to spend cautiously, as the dad of a 10- and 7-year-old will most likely need another kidney in years’ time.
By their estimate, they had about $50,000 left to spend.
On April 8, the Epsteins say, they received an email that the foundation was closing its doors.
In an email to NBC CT Responds, NFT says that after 41 years, “Closure has been a difficult but necessary decision. Economic strain post-pandemic, compounded by healthcare inflation and rising operational costs, alongside declining fundraising, necessitates this decision.”
NFT tells NBC CT Responds there will be no funds remaining at closure and its website says, “Gifts previously made in your honor have been utilized for serving transplant patients and the community.”
“It sounds very much like, just the money is gone, and I just don’t know where it all went and how it disappears without warning overnight,” said MaryEllen Epstein.
The Epsteins reached out to NBC CT Responds and the Connecticut Office of the Attorney General for help.
A spokesperson for the attorney general says its office is investigating, and it has received a second complaint from another local patient too.
“It’s shocking and it’s heartbreaking. This process is so stressful and emotional and terrifying and then for this to happen. It’s just horrible,” said Epstein's wife.
On its recently posted FAQ sheet on its website, NFT writes, “As has been disclosed throughout NFT materials and fundraising appeals, all contributions made to NFT in support of our patient services are typically made as unrestricted donations to NFT and not to any specific individual.”
“But that’s not true because we applied and they gave us an individual account for Eric with an individual web address that we sent out to our friends and family and they were able to click on that and it went right to Eric Epstein’s page with his biography,” MaryEllen Epstein said.
In an email the Epsteins shared with us, their NFT fundraising consultant sent them a drafted letter that they could share with friends.
In the letter, the consultant wrote that readers could donate to Eric’s fundraising page “to help with his expenses.”
The Epteins say they used NFT, instead of a bank account or a crowdfunding platform, to collect money on the advice of experts.
“We wanted people to understand that the money they gave us was solely for his medical expenses, so this was, in our opinion, from talking to social workers and hospitals, this was the safest way to do that,” said MaryEllen Epstein.
NFT’s website says its peer-to-peer fundraising efforts have helped more than 6,400 patients.
According to the internet archive website Wayback Machine, NFT was still asking for donations on its website in March.
The Epsteins wish NFT gave families much more notice of the nonprofit’s alleged financial troubles as they are trying to continue to focus on Eric’s health and try to stay positive about the financial struggle in their future.
“Would I like the money that our friends gave us? Absolutely. Did that money go to help other people? Hopefully that’s the case if it’s all gone, but at the same time there’s thousands of people — if you scroll through that website, — that people donated for to help them get their organ,” said MaryEllen Epstein.
This closure comes in April which is “National Donate Life” month, an initiative encouraging Americans to register as donors.
NFT released a statement to NBC CT Responds on Friday:
Closure has been a difficult but necessary decision. Economic strain post-pandemic, compounded by healthcare inflation and rising operational costs, alongside declining fundraising, necessitates this decision.
All contributions received by National Foundation for Transplants were donated for its discretionary use as a non-profit 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. Tax laws and IRS Regulations prevent the earmarking of any donation or gift to NFT to or for the benefit of any specific individual. Gifts previously made have been utilized for serving transplant patients. There will be no funds remaining at closure.
Together, we have raised $98 million, including $84 million through peer-to-peer fundraising efforts and impacting more than 6,400 individuals. This noteworthy achievement speaks volumes about the generosity and compassion of our community. During the last two decades, we have provided an average of $2 million in grants annually to help alleviate the financial burden of transplant-related expenses.
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.
