SALEM — A collapsed nonprofit organization denying a local family access to thousands of dollars in medication support has been rectified by self-described “businessman and philanthropist” Ernie Boch Jr.
Boch, a billionaire and CEO of Subaru of New England, made a life-saving donation of $11,000 to Donna and Charles Sinclair at their home Wednesday morning.
The donation is a response to the recent abrupt closure of the National Foundation for Transplants, a nonprofit organization that collected and distributed funds for households to get by after an organ transplant.
In Donna Sinclair’s case, the story begins with a Stage 4 diagnosis of Chronic Obstructive Pulmonary Disease that led to a double lung transplant in 2018. Five years later, she’s healthy in part because of anti-rejection medication that she’ll take for the rest of her life.
“If I miss two doses of my anti-rejection medicine, and I take it twice a day, I could be in trouble,” she said.
Enter the National Foundation for Transplants, a nonprofit Tennessee organization that supported transplant recipients and their households.
“Over the years, we have achieved remarkable milestones,” an April announcement from the organization reads. “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.
“In the last decade, we have welcomed 380 new individuals each year, extending our reach and impact nationwide,” the announcement continued. “During this time, we have also provided an average of $2 million in grants annually to help alleviate the financial burden of transplant-related expenses.”
The organization’s April 8 announcement, however, was to inform the world that the organization was shutting down: “After 41 years of dedicated service, the National Foundation for Transplants (NFT) announces that it will cease operations.”
The Sinclair household had raised about $30,000 through the organization, a critical financial resource to cover the cost of housing, medications, and other aspects of life that are traditionally taken for granted until life is upheaved by a major surgery.
“We started with 30 left, had 11 left. The first few months, NFT would pay for the rent, the utilities... so that took a big chunk of it, like $7,000,” Donna Sinclair said. “Then the rest was medication, parking, going into Boston.”
Over the span of five years, the household saved about $10,000 in spending on medication. Then, an attempt to get medication in April was denied on NFT’s end, according to Charles Sinclair.
“They said, ‘they stopped paying April 9,’” he said. “When they told everybody ‘you had until the end of the month to put in for any reimbursem*nts,’ they just shut down.”
With NFT’s shutdown, the household abruptly lost access to $11,000 it had raised and needed immediate access to. The closure of the organization and following volley of questions it received about accessing funds led NFT to publish an FAQ that begins, “no individual donor or patient has a property interest in donations made to NFT.”
“All contributions made to National Foundation for Transplants were made to it as a nonprofit entity,” the FAQ reads. “Neither you nor any donor has personal ownership or financial accounts with NFT.
“All contributions were received for NFT’s discretionary use to support it’s 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.”
The situation came as a complete shock to the Sinclair family, which immediately started broadcasting their plight through local and social media. Along the way, a post about the situation from Fox25 crossed Boch’s cellphone.
“I couldn’t believe it. I didn’t think it was possible for a 501©(3)... a legit 501©(3) to do that,” he said Wednesday, while standing in the Sinclair’s home. “You can’t raise money and then retain the money. It’s just wrong.”
In response, Boch presented a check for $11,000.
“The reason I did this was because the story was so compelling and so outrageous that something like that would happen,” he said. “It just hit me. It just moved me. I have a 501©(3) myself, and with all the rules and regulations, it’s unbelievable that this could happen.”
The family, impressed by the donation and thanking Boch profusely, is still in need of support. With the average life expectancy of a double-lung transplant recipient being five years, the future could still present further hardship. To help, visit tinyurl.com/y6zpnjc8.
Contact Dustin Luca at 978-338-2523 or DLuca@salemnews.com. Follow him at facebook.com/dustinluca or on Twitter @DustinLucaSN.
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