By early December of last year, Susie Silvestri was no longer able to walk or speak. She hadn’t eaten for days. The 70-year-old American found herself in the vice-grip of her rapidly progressing ALS — a disease that causes gradual loss of muscle control. She was begging doctors at the Moose Jaw, Sask., hospital for a feeding tube, but they said no because her U.S.-based insurance company wouldn’t pay the bill. “Nervous and scared,” she texted her brother Charles Silvestri with her one good hand. “This is not what I ever thought my life would look like at this point.” In December, Susie Silvestri was no longer able to eat and was begging for a feeding tube. (Former Goodenowe worker)Susie had come to Saskatchewan from North Carolina three months earlier, chasing the promise of healing offered by Dayan Goodenowe and his Dr. Goodenowe Restorative Health Center in Moose Jaw. It’s a private, unregulated facility that claims “a 100 per cent success rate in stopping the progression and in restoring function of people with ALS.” Goodenowe maintains that every person who enrolls in the program offered at the centre leaves in better condition than when they entered.In her desperation, Susie put her home up for sale to pay the $84,000 US fee. But former Goodenowe employees say that as her condition worsened, Goodenowe centre management left Susie to fight for her life on her own — she had to hunt for an American hospital that would install the feeding tube and find a way to get there.One of those workers, who ended up quitting her job at the Goodenowe centre as a result of how Susie was treated, concluded, “these people had been taking advantage of vulnerable clients like Susie.”Susie’s brother Charles agrees with that assessment.“I think they just robbed her because they had no way to take care of somebody in her condition,” he said. Susie’s situation is reminiscent of the stories shared by other Goodenowe clients in an earlier CBC story. Goodenowe has questioned those reports and filed a lawsuit against CBC claiming its coverage of his program is defamatory.Dayan Goodenowe says his program can stop ALS symptoms from progressing and help patients restore their health. (CBC News)In an email to Goodenowe and his company, CBC outlined the concerns raised in this story and asked for comment. In reply, Goodenowe’s lawyer wrote, “No comment. We don’t talk to people we are in active litigation against.”At the end of her plight, Susie died alone in a U.S. hospital. Her predicament exposed serious gaps in Saskatchewan’s health care oversight system as it relates to private businesses like Goodenowe’s that operate outside of it, according to an expert.”Right now, Saskatchewan’s the Wild West,” said Dan Florizone, a former Saskatchewan deputy minister of health. “We’ve got to figure out a way to actually contain this.””Buyer-beware is not the principle by which we want to operate a health system,” Florizone said.’How could I not be healed?’Susie Silvestri’s ALS symptoms started to appear in October 2022, making it increasingly difficult for her to do what she loved — hiking and kayaking. She was diagnosed with the disease one year later.Susie Silvestri loved spending time in nature until her ALS took away her ability to walk, confining her to a wheelchair. (Susie Silvestri/Instagram)In her desperate search for healing, she came across the Dr. Goodenowe Restorative Health Center. On his YouTube page, Dayan Goodenowe, the scientist who runs the centre, claims “stopping the progression of ALS actually isn’t that hard.” In text messages, Susie told her brother Charles, “Dr. Goodenowe has 8 patients in remission. I am number 9,” and, “He is such a sweet man. How could I not be healed?”On the day Susie Silvestri signed her contract with the Dr. Goodenowe Restorative Health Center, she wrote this to her brother Charles, expressing her deep belief that she would find healing in Moose Jaw. (Submitted by Charles Silvestri)Goodenowe says ALS is caused by a deficit in special fats called plasmalogens, and he claims his supplements can fix it through “human biochemical engineering.” “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,” he said on Dr. Amy Novotny’s Reawaken Your Health podcast late last year.The supplements have not been approved by Health Canada for importation or sale in this country. However, the regulator does allow people, like Goodenowe’s clients, to bring up to a three-month supply into Canada for their own personal use.Susie began taking Goodenowe’s supplements at home. The cost was significant, leading her to ask for donations on a GoFundMe page in May 2024. “The good news is, [Goodenowe] has a 100% success rate with his ALS patients,” she told prospective donors on the GoFundMe site. “Eventually I will be hiking in the [mountains] once again.” After Susie Silvestri discovered Dayan Goodenowe’s supplements, she attempted to raise money to help cover the significant cost. (GoFundMe.com )ALS is widely seen as a death sentence. Eighty per cent of ALS patients die within five years of diagnosis. There’s no known cure and existing treatments do little to slow down the disease, according to the ALS Society of Canada.But Goodenowe insists his program works. Earlier this year during CBC’s investigation of Goodenowe’s facility, he said, “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.” Susie, however, ended up leaving the Goodenowe centre in a rented ambulance with borrowed medical equipment on her way to an American hospital with little help from Goodenowe or his company.No published scientific evidenceWhen pressed during an interview earlier this year, Goodenowe acknowledged there is no published scientific research that backs up his claims that his program can halt and reverse the progress of ALS. But he said he’s working on studies. The chief scientific officer of the ALS Society of Canada, David Taylor, said he has seen no evidence backing Goodenowe’s claims and that if such evidence existed, scientists around the globe would be pursuing that research. “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,” said Taylor. To prove his claims, Goodenowe points to the testimony of some clients who say they’ve improved under his care. While touring the Moose Jaw facility earlier this year, CBC spoke with 65-year-old Scott Myers, who had arrived from Akron, Ohio, just a few weeks prior. He thought Goodenowe’s program may be helping. Scott Myers, an ALS patient in his mid-60s, told CBC earlier this year that Goodenowe’s treatment program seemed to help. (CBC News)“Within the first week, I don’t know if it was psychosomatic, but I had recovered the last movements that I had lost a couple weeks prior to that,” Myers said.But CBC’s investigation found some families who said their loved ones kept getting worse while on the treatment. An $84K bill and a deadlineEventually, Susie applied to Goodenowe’s live-in health centre in Moose Jaw, believing that would help her get the full benefit of his approach. In late August, she was accepted under a tight deadline.“This invitation is valid for five business days,” the email said. The Goodenowe centre also sent an invoice: $75,000 US for the program and $9,000 US for caregiving service — an additional fee because Susie had high needs and she would be attending the program alone. She needed her diapers changed, help getting in and out of bed, and assistance with feeding. Susie Silvestri was charged the standard $75,000 US for Goodenowe’s three month live-in program and an additional $9,000 because she needed additional care due to her advanced ALS. (Submitted by George Silvestri)The day she received that invitation, she told Charles, “looking at selling my home so I can go to clinic in Canada.” Her house didn’t sell within the Goodenowe deadline, so she found an alternative. “She borrowed money because she couldn’t sell the house fast and she told everybody she’d pay them back when she sold the house,” said Charles. “She was trying like hell. When you’ve got a death sentence, you’re going to try whatever you can.”George, her other brother, is one of the people who lent Susie money. He was skeptical of Goodenowe’s claims, but he also wanted to support his sister. On Sept. 12, 2024, Susie Silvestri said goodbye to her brother George and sister Nancy, as she prepared to board a medevac plane bound for Moose Jaw, Sask. (Susie Silvestri/Instagram)“She needed people around her that she knew loved her and cared for her and had her best interests in mind,” he said. Susie’s soaring hopeBecause of her advancing ALS, Susie decided to fly from North Carolina to Moose Jaw, spending an additional $20,000 US on a medevac. “I arrived to a room with a view, the delicious smell of wholesome yummy food and a super friendly staff!” she wrote on her Instagram feed on Sept. 12. “I am well on my way to recovery.” “Watch out for hockey pucks, they move fast and hurt,” Charles joked in a text. “Right now I’m looking out for moose’s,” Susie replied. Susie Silvestri spent $20,000 US hiring a medevac and crew to fly her from North Carolina to Moose Jaw in mid-September of last year. (Susie Silvestri/Instagram)Former Goodenowe staff member Aldana Kerbs said when Susie arrived at the facility, staff members were shocked. “It was our impression, I think, that she required a way higher level of care than we were prepared to give based on our training,” said Kerbs. But she said Susie was “under the impression that she would leave the building walking in three months.” Kerbs, who started with the Goodenowe centre in June 2024, said she was always baffled by how many clients arrived expecting healing. She would tell them, “That’s a wonderful long-term goal for you to have, but I have not seen that in practice over three months with every single client that I’ve seen — I personally have not seen that level of recovery.” Kerbs said she asked senior managers why so many people seemed to arrive with this belief that they would be healed. “We were told that they weren’t told that and that they were just grasping at straws because that’s all they have left,” Kerbs told CBC. She said management also suggested the clients may have believed they would be healed because “they have cognitive issues.”After seeing CBC’s investigation earlier this year and realizing some clients were told about a “100 per cent success rate,” Kerbs put in her two-week notice. “I feel for all the people that participated and didn’t get what they were promised,” she said. “It’s terrible.” ‘If I could leave I would’Susie’s joy with her new environment did not last long. Three days after arriving, she told Charles, “I am having a hard time right now. Can’t cough up and out the phlegm… If I could leave I would. So difficult.” That same day she was taken to hospital and diagnosed with COVID pneumonia, according to medical records provided by her family. After a week in the Moose Jaw hospital, she went back to the Goodenowe centre where she was put in isolation so she wouldn’t spread her infection. During her time in Moose Jaw, Susie Silvestri made several trips between the Goodenowe centre and the Moose Jaw hospital as her condition deteriorated. (Former Goodenowe employee)It was becoming increasingly difficult to take Goodenowe’s plasmalogen supplements.“Today I just wanted to cry. Started full protocol. Torture taking all the supplements,” Susie told Charles in early October. As a result, she wasn’t able to take all of her recommended supplements all of the time. By early November, she told Charles, “I am doing good. Saw Dr G yesterday. He is happy with my progress.” Kerbs said she and the other staff worked regularly with Susie to improve mobility in her hands, feet and arms and found some modest success. However, during this time staff took Susie to the hospital on multiple occasions.According to hospital records, Goodenowe workers “report that she is having difficulty expectorating phlegm due to the ALS and weakness.”Kerbs said hospital staff were not supportive of Susie being at the Goodenowe centre and some suggested she should go home. Kerbs said Susie would exaggerate how well she was doing in the program out of desperation to continue. “The nurses at the hospital would say, ‘So, Susie, have you been able to get some more mobility from the program?’ And she’d wink at you and go, ‘Yeah, mobility’s getting much much better.’ And it’s like, we know that’s not fully accurate.” Goodenowe facility unregulatedAccording to Susie’s hospital files, attending physician Dr. Ryan Sanche raised red flags about the Goodenowe centre, warning Susie that “any claims of efficacy may not be backed by scientific evidence.” “I do have very serious concerns about her safety at that facility and whether she will be able to receive the specialized care that she requires with her advanced neurological disease,” Sanche wrote. The Goodenowe centre is a private business, unregulated by the province and “has no ties to the Saskatchewan health care system,” according to the Ministry of Health. In an email, government officials said the Goodenowe centre is not considered a personal care home, so it does not require a licence to operate. “There is no indication it provides assistance to, or supervision of, a resident in performing activities of daily living,” the ministry told CBC. Instead, the province said, the Goodenowe centre is more like an assisted living facility, offering food, lodging and light housekeeping. However, on its website the Goodenowe centre says “we take care of everything” for people living in the facility, including blood testing, supplements and rehabilitation support. Dan Florizone, a former Saskatchewan deputy minister of health, said it’s surprising that this facility is unregulated, given the level of care it offers and the condition of the clients it serves. Dan Florizone, a former Saskatchewan deputy minister of health, says Susie’s story has exposed major gaps in this province’s health regulations. (CBC News)“We’ve got care delivered to those with high, high needs, to a very vulnerable population, in a facility that has not been inspected,” said Florizone who now teaches at the University of Saskatchewan’s Johnson Shoyama Graduate School of Public Policy. “It’s most likely that [Goodenowe clients] haven’t just given $100,000 to be in some assisted living setting.” Kerbs, the former Goodenowe employee, said most clients had family members with them to provide care and most were not in as dire a condition as Susie. But she said she and the other staff did regularly provide a significant level of care for Susie and a handful of other high-needs clients. “We would lift them a lot to take them to the bathroom, help them with their clothes,” she said. “Some people couldn’t lift their arms to eat so we would have to feed them,” she said. In Susie’s case, Kerbs would change her diaper throughout the day. Kerbs said she always found it strange that the facility was not well suited for people with severe mobility issues like many of the Goodenowe clients. For example, there was no elevator or lift to move patients from the first to second floor.Goodenowe said his program uses the stairs as a source of inspiration. Dayan Goodenowe told CBC that the stairs in his Moose Jaw facility serve as inspiration for his clients to regain mobility. (CBC News)He told CBC that clients will “come in not being able to walk or basically [not] being able to get out of a wheelchair. And the goal is, within three months, is to get them walking up stairs.” Susie’s brother Charles said it’s infuriating that Goodenowe accepted Susie into the facility knowing her fragile, deteriorating condition — and that the provincial government allows this. “I mean, these people are declining,” said Charles. “They’ve got to expect that there’s going to be medical problems. And you don’t have any facility to take care of them, you know? It’s kind of crazy.”Goodenowe employee advocates for SusieOn Dec. 3, a Goodenowe employee arrived at work and was stunned by what she found. In a text message to a friend, she said that Susie had “not been eating for a few days due to her not being able to swallow anything anymore.” We know about this Goodenowe worker’s story because she shared her text messages from this time with a friend, who shared them with CBC.This worker declined an interview. She also asked that CBC not name her because of the trauma this situation caused and her concern about possible legal repercussions.The worker immediately took Susie to hospital and raised concerns with management about the care the Goodenowe centre was providing.“Ultimately, Susie came to us with hopes of recovery and improvement,” the worker texted Jana Horsnall, the CEO of the Goodenowe centre. “I urge us to reassess how we can best support her during this challenging period.”Horsnall, who is Goodenowe’s sister, replied that Susie “knows that we are very good and give our best that’s better than any place anywhere.” In text messages, Jana Horsnall, CEO of the Dr. Goodenowe Restorative Health Center, told an employee that Susie Silvestri was in “better shape” after her stay at the facility. (CBC News)She added that Susie “is in better shape than when she came.” Horsnall told the care worker that she was taken off guard by Susie’s COVID pneumonia, which was diagnosed a few days after she arrived in Moose Jaw. “We would not of taken her if she needed medical care,” Horsnall told the worker. On Susie’s intake form submitted with her application, she said she needed a wheelchair and a mechanical lift to get out of bed. She also indicated she required help with bathing, dressing and going to the bathroom. ‘Self-directed research’While Susie came to the Goodenowe centre expecting healing, she had signed an agreement with the facility to take part in a research program of sorts — a 20-page “customer research agreement.” She mentioned it to Dr. Ryan Sanche at the Moose Jaw hospital. In his notes, he wrote that Susie “was under the impression that she was participating in a clinical trial, testing some novel agent for the treatment of ALS.” When he asked a Goodenowe employee if this “supposed clinical trial has any research ethics board (REB) approval or institutional affiliation,” the worker said he wasn’t “at liberty to disclose that.” Sanche warned Susie “she likely is not participating in a legitimate clinical trial.”In interviews, Goodenowe described his program as “self-directed research,” telling CBC “people come in of their own voluntary will and they develop programs for themselves.”When Susie paid her $84,000 US fee, she also signed the research agreement, saying she was “interested in collecting personalized clinical, behavioral, physical, and biochemical information” and using it “as part of a self-directed research program to optimize [her] health and wellbeing.”Susie Silvestri signed a contract with the Goodenowe organization, agreeing to take part in a ‘self-directed research program.’ (Submitted by George Silvestri)Susie’s brother George said he doesn’t recall her ever saying she was going to Moose Jaw to conduct research on herself. Instead, he said, she went to Moose Jaw with the belief she was going to receive treatment and be healed.Goodenowe’s brochure promoting the program seems to fuel that expectation.It promises to provide ALS, Parkinson’s and Alzheimer’s patients with a “treatment plan” that will restore their bodies to “original manufacturer’s specifications.” The brochure promoting the Dr. Goodenowe Restorative Health Center promises clients a ‘treatment plan’ that includes Goodenowe’s supplements that will help restore their health. (Dr. Goodenowe Restorative Health Center)The 20-page brochure focuses in detail on Goodenowe’s plan to restore, repair and rehabilitate patients, while mentioning the term “self-directed” just two times — once on Page 18, in a section saying “everyone is capable of becoming an expert in their own restorative health journey.”The second mention is in a small print disclaimer on the last page, saying the Goodenowe centre “operates as a self-directed research model and is not a medical facility.” George said Goodenowe’s customer research agreement seemed designed to protect Goodenowe rather than help his sister. “When I read the contract, it seemed like it was really well written to absolve the clinic of pretty much any responsibilities,” George said. “It’s all about, ‘you’re basically coming up here and you’re on your own.’”The contract says the Goodenowe organization will collect extensive data on customers during their stay at the program and all of those documents and samples, “shall be returned to the Customer upon request.” Susie’s sister, who has power of attorney over her estate, has requested this data but the Goodenowe organization has not replied. Dayan Goodenowe says ALS symptoms will stop progressing and, in fact, improve on his supplement program. (www.drgoodenowe.com)Susie looks for U.S. hospitalBy early December, it was becoming almost impossible for Susie to eat. She began begging hospital staff for a feeding tube. However, her American insurance company wouldn’t pay for the surgery at the Canadian hospital. And the Moose Jaw hospital would only do the surgery on a non-Canadian in an emergency situation.Dr. Ryan Sanche wrote, “I have encouraged her to consider returning back to her home country … as this procedure likely cannot be carried out locally,” in a notation on her file. Susie Silvestri went to a hospital in Montana because her insurance wouldn’t cover the cost of installing a feeding tube in Canada. (Former Goodenowe worker)The Moose Jaw hospital did install a nasal feeding tube, which Susie’s insurance covered. But hours later, she asked to have it removed as it was making it difficult to breathe. It was at that point that Susie knew she had no other choice — she had to leave Canada and head to the United States. She summoned the strength to hunt for a hospital in the U.S. that would accept her insurance and perform the surgery. And she had to do it virtually alone. Aldana Kerbs told CBC it was heartbreaking “to see little Susie with her laptop, trying to figure this stuff out.” Kerbs said while staff tried to help where they could, she said management “should have made more of an effort in my opinion to call around and find her the appropriate services.” Susie was able to find a hospital in Sidney, Mont., four hours south of Moose Jaw, that might accept her insurance and do the surgery. The anonymous care worker stepped up to help, assisting Susie with hiring a patient transport vehicle and arranging the trip to the U.S. “I’m strenuously working to support Susie through this challenging period,” she told Goodenowe CEO Jana Horsnall. The worker borrowed her dad’s heart monitor and oximeter so she could keep an eye on Susie’s health during the trip.On Dec. 8, Susie Silvestri was loaded into a patient transport and taken on a four-hour trip south to Sidney, Mont. (Former Goodenowe worker)”I myself is not even qualified,” she wrote to the friend who shared the texts with CBC. “I only operate through compassion.”“Throughout this process, I felt that there was a lack of support from the management at the facility, which made things even more difficult for both of us.”The worker said Susie was being blamed by the centre for not having a plan to get home. However, Horsnall disputed that. “I assure you, Susie had a plan of how to get home,” Horsnall told the worker. “Her condition is not due to our care. We all have gone way above what was planned for her care while with us. I understand that she is desperate but that doesn’t make us the ‘bad guy’””We’ve done everything we can to support Suzy, including paying you for assisting her in arranging her medical care,” Horsnall texted.Who enforces the law?The Goodenowe centre is very public about the fact it has no medical staff and is not a medical facility.The Goodenowe centre is not regulated as a personal care home because the provincial government says it doesn’t provide residents with help in performing daily activities. (CBC News)Goodenowe has a PhD in medical sciences with an emphasis in psychiatry from the University of Alberta. However, he is not a medical doctor and therefore is not a member of the College of Physicians and Surgeons of Saskatchewan. Saskatchewan’s Health Minister Jeremy Cockrill, told CBC that Goodenowe “is not a licensed medical doctor, so he does not fall under any established health regulatory body.” In an email to the province, CBC pointed out that Saskatchewan’s Medical Professions Act forbids non-doctors from offering to treat or actually treating medical conditions for a fee. Section 80 says it’s against the law for someone who is not a registered medical professional to give advice or treat “any disease or ailment by medicine, drugs or any form of treatment, influence or appliance.” It’s also against that law to advertise such services. CBC pointed out to the province that in Goodenowe’s brochures and on his website, he promises to create “treatment plans” for his clients suffering from “neurological or inflammatory conditions,” which will restore their health.The province told CBC that if someone believed the Goodenowe organization was violating this law, they “should contact the College of Physicians and Surgeons.” The college shot back, saying the government is wrong. “I disagree that the College of Physicians and Surgeons is the agency designated to prosecute offences that the government of Saskatchewan has adopted into Saskatchewan legislation,” wrote Bryan Salte, associate registrar and legal counsel with the college. “There is nothing in The Medical Profession Act, 1981 that supports that view.”Bryan Salte, associate registrar and legal counsel with the College of Physicians and Surgeons of Saskatchewan, says his organization is not responsible to go after non-doctors who offer medical advice or services. (CBC News)In response, the government acknowledged to CBC that there seems to be some confusion on this point, promising a review “to ensure there is clarity on who enforces the Act.”To date, it still won’t say which agency, if any, enforces this law. Dan Florizone, the former deputy minister of health, said the government needs to sort this out, as there is a growing number of private businesses offering care on the edges of the mainstream system, without much oversight. He said 30 per cent of health care in Canada is privately delivered and that number is going up. “The legislation as it currently stands gives very few tools in the toolkit to be able to deal with this new and emerging type of entrepreneur,” said Florizone.He said the Goodenowe situation is “a gift” of sorts, as it has highlighted some key gaps in regulation.’You don’t represent us’Susie and the anonymous Goodenowe care worker arrived in Montana on Dec. 8 and were thankful the hospital agreed to help. “Susie and I came here [on a] leap of faith without assurance if we [are] ever going to get accepted,” said the worker. A few days later, Susie had her feeding tube. But her condition continued to deteriorate. Jana Horsnall urged the care worker to make sure Susie was taking her plasmalogen supplements, saying, “The doctors there may not understand them but they are very good and will help.” The care worker told Horsnall the doctors said no. According to the care worker’s texts, she stayed with Susie from Dec. 8 to Dec. 16. She said nurses “are making sure I get to eat by giving me meal vouchers every day.” In text messages, the former Goodenowe worker said ‘people had been taking advantage of vulnerable clients like Susie.’ (Former Goodenowe worker)Susie was desperate to go home so she could be close to her family. But she was losing hope and began to research assisted suicide. The Goodenowe worker told Horsnall about Susie’s despair and her research. Horsnall’s tone took a dramatic turn. “I am shocked… You do not represent us,” Horsnall wrote to the worker. “I know she hired you and you are there on your own with her. That is nothing to do with us.”The worker replied, “Susie is not just a friend. She’s an aunt to me now. Although Susie was willing to pay me, I declined.”In a text message to a friend, the Goodenowe worker described her reaction. “She gaslighted me into saying that Susie hired me in person to be with her and that has nothing to do with her company which was far from the truth,” the worker texted.On Dec. 16, the care worker left Susie’s side. That same day, she quit her job at the Goodenowe centre. “I realized that these people had been taking advantage of vulnerable clients like Susie,” she wrote to her friend. When CBC reached out to Goodenowe about this story, his lawyer David Brundidge replied, “We are hoping not to litigate this matter in the media.” ‘I am fading fast’On Dec. 21, 2024, Susie texted her siblings, “I am fading fast.” “We love you. Stay as strong as you can,” her sister Nancy Rivera wrote. “We’re working on getting you home.” That was their last written exchange. In her final message, Susie sent a picture of a Christmas tree hospital staff had set up in her room.On Dec. 24, Susie sent her family group chat a picture of a Christmas tree hospital staff had placed in her room. She died Dec. 26. (Submitted by Charles Silvestri)Susie Silvestri died on Dec. 26 in the Sidney, Mont., hospital. Her death certificate says she died of ALS with acute and chronic respiratory failure. Her brother George said he deeply misses her and is disgusted by how she was treated. “They’re preying on people that are looking for answers where there may not be any at this time,” he told CBC. “Offering people false hope.”
American ALS patient died alone after paying $84K US in pursuit of healing at controversial Sask. facility
