Local News
Winnipegger Mark Joseph leading efforts to fund treatment for rare genetic disorder that afflicted his daughter

By MYRON LOVE It’s not likely that many readers are familiar with Prader-Willi Syndrome (PWS), but it is a condition that Mark and Jennifer Joseph know all too well, as their ten-year-old daughter, Darwin, lives with this disorder.
Prader-Willi Syndrome is a rare life-threatening genetic disorder that occurs in approximately one out of every 15,000 live-births. PWS affects many aspects of an individual’s life. A particular symptom is a relentless and insatiable hunger.
“We were fortunate that we were living in Toronto when Darwin was born so that we had access to many, many specialists and the Hospital for Sick Children,” says Mark, a pilot with Westjet who moved to Winnipeg in 2021. Immediately at Darwin’s birth the doctors knew there was something atypical about Darwin. The room flooded with specialists to assess and treat the newborn, who was labelled “failure to thrive,” as she was as limp as a rag doll, and wasn’t crying. “This was definitely one of the scariest and most traumatic experiences of our lives,” adds Mark.
“The hospital’s lead paediatrician had no experience with PWS, but remembered hearing of it. Genetic testing began, and by one-month-of-age, we had a definitive diagnosis of Prader-Willi Syndrome – a diagnosis that would change the trajectory of our lives,” notes Jennifer.
“Darwin’s diagnosis required us to become experts in her condition,” says Mark, who is the newly installed President and Chair of the Foundation for Prader-Willi Research Canada. “Most medical professionals have never encountered anyone living with it. We had to learn all we could to best advocate for our daughter so that we could have the best possible outcome for her future.”
“Darwin’s early years were filled with therapies – physical therapy, occupational therapy, speech therapy, hippotherapy, even feeding therapy, as an infant due to her low muscle tone. We still have therapies, but nothing like in Darwin’s first year of life. Before the age of one, we had attended over 165 medical appointments and therapies. It was exhausting and mentally very hard. This was our first child and definitely not how we had envisioned parenthood,” says Jennifer.
As Darwin has aged, her insatiable appetite has grown with her. In order to keep her safe and provide her a bit of independence in her own home, Darwin’s parents have had to put locks on the fridge and pantry. “Anywhere that food is stored needs to be locked. This helps us keep Darwin safe from overeating, as individuals with PWS have a high pain threshold and can unfortunately eat until they rupture their stomach. But it also helps Darwin manage her food-related anxiety so she doesn’t have to worry about gaining access to food and hurting herself,” notes Mark.
Food needs to be controlled and scheduled in any environment in which Darwin is present. Her school has taken great lengths to ensure food safety and open communication about food-related activities. Every meal has to be nutritious and portion controlled, as not only is Darwin always hungry, her slow metabolism requires her to need only half the typical calories of her peers – otherwise she will face life-threatening obesity and its related diseases.
Locally, on Sunday, June 9, Mark and Jennifer – in conjunction with three other Winnipeg families who are raising children with PWS, organized their second annual “One Small Step” Walk for Prader-Willi Syndrome Research at Kildonan Park. Mark reports that this year’s walk attracted 130 participants and raised over $22,000 – about $6,000 more than last year.
The funding, he reports, is being directed toward research. Clinical trials are taking place around the world to help understand the mechanisms of Prader-Willi Syndrome and investigate new treatments. One such trial is being conducted by Dr. Jennifer Miller, a professor and researcher in the division of Paediatric Endocrinology at the University of Florida in Gainesville. Dr. Miller, the world’s leading specialist in PWS, currently works with over 500 patients with Prader-Willi Syndrome from around the world, and has been working towards achieving an effective treatment for hyperphagia (insatiable hunger) for the past 12 years.
The Josephs report that research may be close to a breakthrough in developing a treatment that can minimize some of the more challenging aspects of PWS. “Right now, Darwin is in public school,” Mark notes. “She can read and write and is fairly high functioning, but she is constantly hungry and anxious about food and distracted by the desire to attain food. This obviously has a huge effect on her ability to concentrate and learn. Without treatment, she will not be able to manage the demands of high school or look forward to a career.”
“A treatment will be life-changing for her and for us as a family – she may be able to lead a full and independent future… something we never thought we’d see in the early days of her diagnosis,” adds Jennifer. “Mark himself was responsible for much of the increase in the amount of money raised at this year’s walk thanks to the extensive network of contacts that he has built up over the years through his career in the aviation industry, and as a part of the Jewish community.
“A lot of people are willing to help, but they don’t know how,” Mark observes. “Our fundraising walk provides focus for friends, family, colleagues, and even strangers who want to help.”
For Mark, this is his second go-around in Winnipeg. He previously lived and worked here in 2008. That was when he met Jennifer. He himself is originally from Toronto. He notes that his father is from Haifa and his mother grew up as part of a small Jewish community in Cornwall – which is about 90 km southeast of Ottawa. Although his wife Jennifer is not Jewish, the couple agreed to raise their children – Darwin and younger brother Edison, in the Jewish faith.
“In Ontario, we were living in an area called the Blue Mountains, two hours north of Toronto, and there was no Jewish community,” Mark notes, “So when the pandemic happened, we decided that it was time to move back to Winnipeg to be closer to Jenn’s friends and family. Knowing that there was a large and vibrant Jewish community here made the decision an easy one.”
The Josephs enrolled their son Edison in Gray Academy for junior and senior kindergarten, and then transferred him to the Brock Corydon Hebrew Bilingual program. “We want him to have a strong foundation and connection to his Jewish roots,” Mark says. And though Darwin is not enrolled in the Hebrew program, she enjoys many activities and programs through the Rady JCC. “We are looking forward to deepening our involvement in the Jewish community,”Mark adds.
Readers who would like to support the Josephs’ efforts to develop a treatment for PWS and alleviate the challenges that Darwin and those afflicted with PWS face, can do so by visiting their One Small Step fundraising page at: tiny.cc/70cpyz
To learn more about Prader-Willi Syndrome and the research being conducted you can visit: www.fpwr.ca or www.fpwr.org
Local News
Long-time Winnipeg doctor and Israeli colleague make medical app available to general public

By MYRON LOVE Seven years ago, Dr. Gerald Minuk, Canada’s first hepatologist (liver specialist), partnered with Israeli computer science student Daniel Iluz-Freundlich in founding Refuah Solutions Ltd (RSL). Their goal was to create an app – which they called PI-enroll (“PI” stands for “Principal Investigator”), which was designed to be used by clinical trial investigators that would save them time and effort so they could be more personally involved in seeing their trial patients.
Last month, they released their second app, this time for patients. The app, called Patient-empower, informs patients about clinical trials underway for their condition and helps them make an informed decision as to which trial best meets their specific needs and preferences.
“I was approaching retirement,” recalls Minuk, now Rady School of Medicine Professor Emeritus, who has been in practice in Winnipeg since 1987, and “I couldn’t see myself filling my days doing crossword puzzles or Sudoku. I wanted to be able to continue contributing to medical research and patient care.”
It just so happened that, at the time, Minuk was introduced to an Israeli student, Daniel Iluz-Freundlich, who had just finished studying Computer Sciences at the University of Winnipeg. (Minuk notes that Iluz-Freundlich – on graduating – received the Gold Medal in Computer Science.)
“Daniel is an exceptionally talented young man,” Minuk says. “So I tapped his computer programming skills to create our PI-enroll and subsequently, our Patient-empower apps.”
The friendship continued after Iluz-Freundlich returned to Israel in 2020 to begin medical school on a Phil and Elle Kives Scholarship, where he earned numerous honors. Iluz-Freundlich is currently an intensivist anesthesiologist at the Beilinson Hospital in Israel. Despite his new professional responsibilities, including caring for IDF forces wounded in Gaza– he has remained active with Refuah – as vice-president of the company.
Minuk adds that a dozen other senior professors of medicine also contributed to Refuah’s software design. “Together,” he reports, “the company represents 400+ years of clinical trial experience. That experience is being applied to identifying and addressing the major challenges investigators and patients face when conducting or participating in clinical trials.”`
He adds that Refuah Solutions has established a truly global network with company personnel in San Diego, São Paulo, Mexico City, London, Barcelona, Nairobi and Delhi thus far.
According to Minuk, the company has enjoyed worldwide success – with over 2,000 doctors in 40 countries and 50 drug companies signed on for the PI-enroll app. He attributes this success to the app’s impressive results. In a recent global clinical trial, Minuk reports, within 3-6 months of implementing PI-enroll, investigator personal involvement increased by 60% and with that, patient enrolment increased by 80%, patient drop-outs decreased by 50% and there were 20% fewer protocol deviations (mistakes made). In addition, 90% of PIs rated the App 8 out of 10 in terms of usefulness.
He adds that one site that had not enrolled any patients for 12 months, subsequently became the trial’s leading enrolment site.
Regarding the newly released Patient-empower app, Minuk notes that despite the many benefits patients derive from clinical trials including free and early access to new and often safer and more effective treatments, fewer than 10% of patients who would qualify for a clinical trial are ever invited to consider that option. “The problem,” he explains, “is that most Health Care Providers are either unaware of what clinical trials are underway in their area or if they are aware, don’t have the time to discuss the trials with their patients.”
Therefore, Minuk, Iluz-Freundlich and their team designed and recently released their second app – Patient-empower – which informs patients of what clinical trials are underway for their condition and empowers them to select the trial that prioritizes their needs over those of industry.
The platform, he explains, uses AI to generate concise, easy-to-understand summaries of clinical trials tailored to the patient’s location—city, state, country, or globally, depending on their preference. Each summary includes clear explanations of the patient eligibility criteria and key practical details, such as the likelihood of patients receiving a placebo, the number of required site visits, and other important practical considerations. It also suggests questions that patients should consider asking the investigator before they consent to enrolling. The trial information is presented in a shareable format to facilitate discussions with family, friends, and local healthcare providers—supporting both patient confidence and continuity of care.
Once a trial is selected, Minuk continues, Patient-empower provides the contact information for the trial investigator closest to the patient’s location, the trial’s sponsor and, where available, the world’s experts in the field.
The feature Minuk is most enthusiastic about is the “Recent Findings” page which keeps patients up to date on newly published clinical trial results and discoveries relevant to their condition.
“Patient-empower is available to patients from internet venues (App Store or Google Play) or through NFP organizations, associations, societies and patient support group web-sites,” he adds. “Although only recently released, we have already attracted interest from the American Diabetes Association, the Alzheimer’s Society of America, the Canadian Liver Foundation, Colorectal Cancer Canada, the American Myasthenia Gravis Society and many others.”
“Overall, Patient-empower informs patients, and more informed patients benefit everyone involved. After all, it’s the patient’s health; their voice should be heard,” Minuk concludes.
Local News
The South Seas come to the Asper Campus

By MYRON LOVE On Thursday, July 24, about 150 members of our Jewish community got a chance to sample the dance and music of the South Pacific. The event was billed as “Beyachad Together – Celebrating Indigeneity, land, culture and identity.”

The program featured both the Sarah Sommer Chai Folk Ensemble dancers and Steinbach-based Island Breeze Manitoba – which describes itself as “a high energy live band & Pacific Island dance team featuring authentic outfits and dances from the islands of Hawaii, Tahiti, Fiji, Samoa and New Zealand.”
According to Dr. Ruth Ashrafi, Regional Director of B’nai Brith Canada in Manitoba, the evening’s performance was connected to an Indigenous Peoples Conference that was held in Steinbach under the auspices of Island Breeze with participants from Canada, the United States (specifically Hawaii), Antigua and Bermuda in the Caribbean, South Africa, the Philippines, Japan, Australia, New Zealand and the South Pacific island countries of Fiji, Tonga, Samoa, the Solomon Islands and Tonga.

“The conference organizers contacted B’nai Brith Canada,” Ashrafi reported. “They wanted to bring greetings to the Jewish community, as the indigenous people of the Land of Israel, and celebrate indigeneity together through dance and music.
“Their support in these difficult times is heartwarming.”
In her opening remarks as emcee for the evening, Ashrafi noted that “it is a great honour for the Jewish community to welcome so many indigenous guests from all over the world.”
She then related the story and miracle of Chanukah and connected it to the experience shared by many indigenous nations around the world.
“They have been told that their religion is wrong, their traditions are not sophisticated,” she pointed out, “just as the Jews of that time were told by the Greek rulers that our religion was wrong and our traditions were outdated.
“Here in Canada, the First Nations were forced into Residential Schools to learn Canadian ways. The manner in which they were taught in these schools was abusive and horrific. Many children died, and many more were scarred for life.
“As with the Maccabbees,” she continued, “courageous individuals have stood up and fought for rights of their indigenous brothers and sisters. They had to overcome a lot of resistance and other obstacles. Indigenous peoples are still over-represented in the Canadian prison system and social services.
“The story of Chanukah tells us that it is okay to be different from the majority culture,” she said, and “that special and unique traditions are important and worth preserving.
“The story of Chanukah also teaches us that fighting for our rights is not easy,” Ashrafi added. “We may be a tiny minority and the other side may be much more numerous, better organized and equipped. But if we take the first step, like deciding to use that little jar of oil (that burned in the Temple for weight days even though there was only a day’s supply), we will be helped along the way.”
“We put the Menorah in our front window,” she noted, “so that the light is shining into the dark winter nights. We want to share the story of the Chanukah miracle and we want to bring light into a world that has still so much darkness in it.”
Ashrafi’s words were followed by greetings from David Harper, a former Manitoba Keewatinowi Okimakanak Grand Chief who spoke glowingly of his visit to Israel in 2014.
“Our faith teaches us that the People of Israel are the people of the Bible and we must bless them and pray for them,” he said. “My people have a lot to learn from the people of Israel about healing the land.”
Next, Ashrafi introduced Pastor Roger Armbruster whom, she described, as the man behind the vision for the evening. Armbruster, a strong Christian Zionist supporter of Israel, is the founder of Canada Awakening Ministries.
She said of Armbruster that “it is a privilege to be his friend. I have learned so much from you.”
According to Armbruster’s bio on the Canada Awakening Ministries website, “his life has been dedicated to a ministry of reconciliation, and of building bridges between cultures, nations, denominations and generations. He sees cross-cultural reconciliation as a key to making disciples of all nations, and in seeing God’s House become a House of Prayer for all nations.
“As director of Canada Awakening Ministries, he is a leader in facilitating Native-Non-native reconciliation, and in restoring the indigenous peoples of the land to reflect that part of God’s image that He has deposited in them in their sounds, songs, praise and dances.”
Armbruster attended the Inaugural World Christian Gathering of Indigenous People in New Zealand in November 1996 as well as gatherings in Rapid City, South Dakota, in 1998, northern Sweden in 2005, and Israel in 2008. In his remarks, he noted that he has visited Israel numerous times over the years – often leading tour groups representing Canadian Inuit, Greenlandic Inuit and Manitoba First Nations at the northern ends of the earth, along with Maori, Fijians and Samoans from the southern ends of the earth – back to the City of Jerusalem from where the original gospel message first came.
“In Israel,” Armbruster said, “these Indigenous People have shared their language, their culture and their faith with both Jewish and Palestinian audiences alike. In one Israeli community, they even shared a message that brought hope to a joint audience of some 500 people that included both Jews and Arabs coming together.”
The dance part of the program was emceed by Isi Masi of Island Breezes. The musical program included several Hawaiian dances, including a rousing foot-stomping number,followed by performances featuring Hawaiian song and gentle movement. The final part of the island dances concluded with a brief Maori war chant.
(The Maori are the indigenous people of New Zealand.)
The final part of the program included several high octave dances by our own – always outstanding – Sarah Sommer Chai Folk Ensemble, with all the performers singing “We Shall Overcome” and the audience invited to join in a round of Israel dancing.
Local News
Israeli-born realtor believes in paying it forward

By MYRON LOVE When Hofit Yanev and her husband, Stefan, first arrived in Winnipeg in May 2013, they knew no one here.
“We were looking for a safer environment in which to raise our children,” she recalls. “We thought that would be Canada, and Winnipeg seemed to be the most welcoming Jewish community.”
Despite not knowing anybody, on their first morning in our community they found that someone had left a challah on their doorstep. That was a small kindness that she has never forgotten. She is a strong believer in paying it forward. Ever since then, she notes, she has made sure to greet newcomers in our community with a challah.
Helping others – whether to buy and sell their homes or manage their money – is a principal focus of the thriving career she has built up here as a real estate agent and insurance adviser.
Sales has always been Hofit Yanev’s strong suit. Originally from Holon (near Tel Aviv), she began her sales career right after her army duty. Her first venture was selling Dead Sea and hair care products. (Some readers may remember the kiosks that used to be set up at some Winnipeg shopping centres some years back.) She worked a year in Chicago and four years in Miami before returning to Israel, where she met and married Stefan.
Soon after settling in Winnipeg, Hofit found work in sales, initially for an HVAC company (while Stefan became a long-distance truck driver and now operates Excellence Fences and Decks). “As I was doing very well in sales for this company,” she recounts, “after taking time following the birth of our third child, I decided to try selling houses.”
She secured her real estate license and went to work. After 18 months of trying, she was still struggling to make a go of it.
“I lacked experience,” she recalls. “I reached a point where I was ready to give up and go back to selling HVAC products.”
However, on what she thought would be her last day, she received two calls that revitalized her hopes. In quick succession, she recounts, she got a call from a former customer who wanted her to sell his house and a new customer who wanted her help in selling his house and buying another.
“I took it as a sign from God,” she says.
Today, eight years later, Yanev, working under the eXp Realty banner, oversees an operation with over 20 agents—nine of whom are on her team and the others working under her in the eXp umbrella.
“I achieved my dream,” she notes, “and I want to help others – either those looking to buy a home or fellow realtors starting out – to realize their dreams as well.”
She notes that she strives to understand what her clients’ needs are and provide the right homes for them. She reports that 70% of her real estate clients are members of our Jewish community. She deals with commercial as well as residential properties and adds that she also helps clients with long- and short-term rentals as well as car rentals.
About a year ago, she notes, she added another entry to her resumé – that of insurance adviser. “As a realtor, I could see how some people are struggling financially,” she says. “I wanted to help.”
As an insurance adviser, she works with single mothers, seniors, and others plagued by financial difficulty. “I advise clients on how to get out of financial trouble, how to save 10% of their net income, and build their savings.”
She makes it clear that she keeps a distinct separation between her real estate clients and her insurance clients.
Now, you would think that an individual working two careers – with five kids to raise (all of whom are enrolled in Jewish educational programs) – would have her hands full. Nonetheless, Yanev has a third avocation – that of a social events planner for fellow Israelis in Winnipeg and other Hebrew speakers.
“For the past six years,” she reports, “I have been producing five programs a year in our community for Hebrew speakers. No one else was doing it, and I felt that it was important for Israelis here to be able to connect with each other.”
She adds that the family-oriented programs have been “super successful.” “We have had as many as 300 people at some of our programs.”
Yanev believes that her success story can inspire other newcomers to Winnipeg. “If you are prepared to work hard, you can achieve your dream,” she says.
She also expresses gratitude to our Jewish community. “We have found the community here to be welcoming and supportive,” she says. “It is thanks to you that we have been successful. This really is friendly Manitoba.”