Susie Silvestri, a mother of three who lived in North Carolina, recently died after exhausting $84,000 on an often-criticized program. This remarkable case illustrates the lengths at which patients with amyotrophic lateral sclerosis (ALS) will go to get treatment, featuring the amyotrophic lateral sclerosis-as-cause program spearheaded by Dayan Goodenowe in Moose Jaw, Saskatchewan. Silvestri’s adventure began in late August of 2024. She started treatment that Goodenowe said could reverse the effects of ALS with his patented method of “human biochemical engineering.”
Goodenowe, the founder of the facility, believes ALS is caused by a lack of plasmalogens—special fats necessary for health. He is passionate about supplementing these unique fats because he has seen how dramatically they can help patients. He boldly tells everyone that he has a 100% success rate with his patients. He can make that claim, he told us, because every single person who comes through his program has better health outcomes than when they entered. His somewhat audacious aim is to get patients climbing stairs three months after beginning the regimen.
Despite the enticing promises, Goodenowe’s program lacks scientific backing, with no published research supporting his claims about halting or reversing ALS progression. Silvestri’s experience is a cautionary tale that shows the ethical implications of unverified treatments and the targeting of vulnerable patients looking for hope.
A Costly Pursuit of Hope
Susie Silvestri’s trip to the new Saskatoon facility was anything but smooth sailing. She had to sell her house to pay for her treatment. After that, she created a GoFundMe account to raise money for the high cost of Goodenowe’s program. The project ended up costing $84,000. That meant $75,000 for the three-month live-in program and an additional $9,000 to offer intensive care, better suited for her late-stage ALS.
Silvestri’s dedication to her treatment went further than financial sacrifices. She coordinated a medevac flight from North Carolina to Moose Jaw, at a cost of $20,000 on top of that. From Hope’s perspective, her ambitions were small but mighty as she signed a contract with Goodenowe’s nonprofit on August 29, 2024. Her experience would quickly turn upside down. She experienced ongoing challenges with swallowing and meals throughout her hospitalization.
“Ultimately, Susie came to us with hopes of recovery and improvement,” – Jana Horsnall
By early December 2024, Silvestri’s health had taken a dramatic turn for the worse. She made the decision to go into the hospital on December 8th, where she was diagnosed with COVID pneumonia. Her tragic death soon afterward gave further cause for alarm. People doubted the quality and attention of care at Goodenowe’s facility and the follow through support patients had after they left treatment.
Promises and Practices Under Scrutiny
Goodenowe has unapologetically defended himself against skepticism and attacks on his treatment protocol’s effectiveness. He requires that each patient that walks through his door should walk out improved. He’s passionate about making them better.
“We do document every single person that comes through our centre, OK? They leave that centre better than they came in, OK? And that’s just simply a fact.” – Dayan Goodenowe
Former employees at the facility have raised significant red flags. One community member testified that vulnerable clients like Silvestri were routinely taken advantage of by the clinic’s false assurances. This calls into question the ethicality of the treatment methodologies used and if patients are fully educated on the potential harm they may cause.
“These people had been taking advantage of vulnerable clients like Susie.” – Former Goodenowe worker
In response to these comments, Dan Florizone was concerned about the message we send to patients when we present them with treatment options. He reiterated that “buyer-beware” shouldn’t be the guiding principle for our healthcare system.
“Buyer-beware is not the principle by which we want to operate a health system,” – Dan Florizone
The Broader Implications
The case of Susie Silvestri sheds light on a broader dilemma faced by many individuals diagnosed with ALS: the search for effective treatments in a field where research is ongoing and solutions remain elusive. Experts urge policymakers not to put their faith in untested cures that prey upon patients’ desperation.
David Taylor, a theoretician on the cutting edge of ALS research, put this concern very succinctly.
“You have an individual person’s hypothesis versus an entire field of people who are spending every moment of every day trying to find that thing that’s going to fix the disease.” – David Taylor
While Goodenowe expresses confidence in his treatment philosophy, claiming that providing the human body with necessary cellular ingredients will lead to self-repair, his assertions remain unverified by scientific standards.
“If you actually provide the cells of the human body with the ingredients that they need and then put yourself in an environment that stimulates that adaptability, the body will fix itself.” – Dayan Goodenowe
