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
GrowWinnipeg celebrates 25th anniversary

By MYRON LOVE On Wednesday, June 25, about 250 Jewish Winnipeggers – comprising lifelong residents as well as newer arrivals, came together at the Asper campus to celebrate the 25th anniversary of GrowWinnipeg, an initiative that has revitalized our Jewish community – in our camps, school, synagogues and other institutions and given our community a much more international flavour.
Our community’s population peaked in terms of population in 1961 when Winnipeg Jewry numbered around 20,000. The years after had been a period of steady decline. By 1961, most of the Jews living in smaller communities in the Prairie provinces – the source of much of our ongoing population replenishment up to that point – had largely disappeared.
A s Bob Freedman, the former CEO of the Jewish Federation of Winnipeg (and its predecessor, the Winnipeg Jewish Community Council), noted in his remarks at the 25th anniversary party, by 1986, community leaders recognized that ours was an aging and shrinking community with aging infrastructure.
“We recognized that something had to be done,” he recalled.
The first stage, he pointed out, was the planning and construction of the Asper Campus, which brought our major institutions and organizations under one roof in an attractive new building.
The next challenge was to attract more people to our community. GrowWinnipeg was created to take on the challenge. GrowWinnipeg is unique in its efforts to reach out to young Jewish families throughout the Western world .
The genesis was a chance meeting on an airplane almost 30 years ago between former Manitoba Lieutenant-Governor Janice Filmon – at that time the wife of then-Manitoba premier Gary Filmon, and a Jewish businessman from Argentina who was contemplating moving to Toronto. Filmon persuaded him to consider Winnipeg instead. He was impressed by what he saw and suggested that the community send representatives to Buenos Aires to meet with other Argentinian Jewish families who were considering leaving.
That planted the seed.
Shortly thereafter – in 1998 – Larry Hurtig – then the president of the Federation, his son, Jack, and a representative of the provincial government, made an exploratory visit to Buenos Aires to gauge what interest there might be among young Jewish families to consider moving to Winnipeg.
GrowWinnipeg was officially launched in 2000. Our community opened its arms in welcome to the new arrivals who began to arrive, hosting them in our homes and helping them become acclimatized to their new surroundings.
Evelyn Hecht became the principal contact for the newcomers. “I was lucky that I happened to be working for the Federation when we opened the campus and turned our energies to repopulating our community,” Hecht noted in her remarks at the recent celebration. “Fortunately, the pieces fell into place at just the right time.”
Those pieces, Hecht related, included: the Manitoba Provincial Nominee Program – which allowed community support groups to recruit specific immigrants; the arrival of a small number of Jewish families from Buenos Aires who encouraged community leaders to look to their former home as a potential source of Jewish immigrants; and the availability of email and the internet.
The initiative – led by Hecht – recruited a group of local Jewish families who were prepared to host potential immigrants who had begun to come for exploratory visits. The connections made by the new arrivals and their local hosts resulted in many long–lasting friendships, Hccht noted.
She praised Jewish Child and Family Service for helping the new arrivals to become established here and integrate into the community.
Efforts were also made to build a data basis of potential employers for the newcomers.
GrowWinnpeg was kicked off by two visits to Buenos Aires – visits Hecht describes as “exciting and exhausting” – in the early 2000s, when Hecht and other Winnipeg representatives met with potential immigrants and heard their concerns about life and personal safety in Argentina and hopes for the future that Winnipeg might be able to give them.
“I remember,” she said, “the numerous meeting I held in my office on the third floor here listening to people’s excitement and concerns and answering questions about life in Winnipeg, our Jewish identity, schools, synagogues, employment, housing and especially, safety. I always emphasized that they would encounter struggles, disappointment and possibly, crises – but I assured them that we would be here to help.
“And I remember feeling so much happiness when people would show up at my door to share good news about babies born, bar and bat mitzvahs, graduations and new jobs – and the numerous times I was in Citizen Court where so many were so proud to receive their citizenship certificates. “
And they are still coming. Dalia Szpiro, Hecht’s successor, reports that, over the past 25 years just under 7,000 people have come here under the aegis of GrowWinnipeg – and not just from Argentina. We have had families from Brazil, Uruguay and other South American countries, Mexico, Europe, and, in more recent years, especially from Israel.

For former Israelis I spoke with on the 25th, such as Slava and Karina Pustilnikov, Irena Oz and Marina Shapiro and her 19-year-old son, Adam, all of whom have been here for 10 to 15 years, the primary motivation was being in a safer environment.
For Ori Rahima and his wife, Anna Shapiro, who have been here for seven years and have three children under six, the pull was greater opportunity and a better standard of living.

Then there is Esther Barna, a teacher by training, newly arrived from Budapest. “Hungary is not a good place to be a Jew,” she says. “There is a lot of antisemitism. I was looking online for a better place to go and came across the GrowWinnipeg website. I love it here.”
In her concluding remarks, Dalia Szpiro, herself an immigrant from Uruguay about 20 years ago, thanked the many Jewish organizations and individuals in the community who have helped to make GrowWinnipeg the success that it is.
“Over 250 volunteers each year meet with our exploratory visitors – opening their homes, their hearts, their time, their insights and their networks,” she noted. “There is something very special about our community and our province. Every exploratory visitor who comes here as part of their immigration journey discovers it.
“This 25-year milestone is a reason for pride and celebration – and a renewed commitment to the future. We are already working on new strategies – to strengthen what we have built, support immigration, foster inclusion and create more opportunities for newcomers to grow and prosper.”
Local News
Long time community members Bryan Schwartz, Myriam Saitman receive rabbinic ordination

By MYRON LOVE On June 21, Bryan Schwartz and Myriam Saitman received their rabbinical ordination through the Jewish Spiritual Leaders Institute (JSLI) Rabbinical School – bringing the number of JSLI rabbinic graduates in our community to seven.
“I felt a calling,” says Saitman, who is the new spiritual leader of Temple Shalom, our community’s roughly 60-year-old Reform Congregation. Saitman notes that she is Temple Shalom’s fourth female rabbi.
Originally from Buenos Aires, Saitman and her family answered our community’s call for new young Jewish families that began with the Federation’s GrowWinnipeg campaign. They arrived here in 2003.
“We were attracted by a community that offered a safer environment for raising a family and better economic opportunities,” she recalls.
Although raised in a secular family, she notes that, as a young adult she was drawn to learning more about Judaism. “I took Hebrew classes in Argentina and started on a spiritual path,” she recalls.
Soon after coming to Winnipeg, she found her spiritual home at Temple Shalom. Over the last many years, she has served as a volunteer in several capacities at the synagogue – both at the school and as a long time member of the board. Since 2016, she was also one of the lay service leaders, often leading Kabbalat Shabbat services on Friday evenings.
When her predecessor, Allan Finkel – also a JSLI grad – let it be known that he was planning to retire after six years as the congregation’s spiritual leader, Saitman put her name forward as a potential successor.
“Judith (Huebner) and Ruth (Livingston) (Temple Shalom’s president and past president respectively) were really supportive as were the board and the congregation,” Saitman says. “I began leading services.”
As for the JSLI program, Saitman notes that it is intensive. “It meets a need,” she observes. “It prepares us well for all the requirements of being a congregational rabbi.
“We at Temple Shalom want people to know that we are here and we welcome interfaith families,” she adds. “Our motto is that we follow tradition and embrace modernity. Our services (on Friday evenings) reflect the essence of Reform Judaism where we allow for individual choices. I’d like to stress that individual choices are informed by an educated interpretation based on knowledge of the laws and customs.”
Unlike Saitman, Rabbi Bryan Schwartz was not considering a career as a congregational rabbi when embarking on the JSLI program. For Schwartz, “rabbi” is the latest title in a lifetime of achievement. As this writer noted in a story in the Post about Schwartz last year, he “is the very model of a modern-day, Jewish, Renaissance scholar.”.A long-time professor at the University of Manitoba Faculty of Law, he is also a passionate Zionist, student of the Holocaust and an in demand commentator on modern legal and constitutional issues. He has written or contributed to 34 books and over 300 publications in all – in a legal and teaching career that stretches back more than 40 years. His works within a Jewish context encompass the gamut of Jewish life from ancient times to the Holocaust to the current Jewish situation. In addition, he is a poet, playwright and songwriter.
“My main purpose in taking the JSLI course,” he observes, “is to be better positioned to help deal with the challenge of Jewish survival. I want to be able to pass on Jewish tradition to the younger generation and impress upon younger Jews – who have grown up in largely secular homes – the value of our 2,500-year-old literature, culture and religious traditions.”
He observes that there is something for everyone in Jewish tradition. “There are many people who are looking for a spiritual community. I believe that Judaism provides us with a sense of our place in the universe.”
Schwartz – a lifelong student himself – notes that he has been building to this moment for a long time. In his early 20s, he notes, he audited a few courses at the Jewish Theological Seminary. In his 50s and 60s, he learned Hebrew at different ulpans.
“I had been looking around for a while for a rabbinic program,” he says. “JSLI seemed to be the best one. It was hard work – but well worth it. I learned a tremendous amount.”
So what is Schwartz – who is a member of the Shaarey Zedek – planning on doing as a rabbi?
“I would like to be able to offer weekly dvar Torahs,” he says.
He would like , among other things, to do creative and educational projects for the community, like his weekly dvar torah in the Times of Israel. The commentary that he gave on the weekend of his Smicha ceremony is called “From Burning Synagogue to Rising Lyon,” and can be found at https://blogs.timesofisrael.com/from-burning-synagogue-to-rising-lion/
“I have also been writing books and musicals inspired by the Tradition, and hope to find forums to share them in the years ahead,” he adds. “My mission is to share in the radiance of our Tradition and help inspire the next generations to see its warmth and illumination”
Local News
Winnipeg Fringe performer Melanie Gall subjected to antisemitic attack – for second year in a row

By BERNIE BELLAN (July 20, 2025)
Melanie Gall is a talented performer who is a veteran of the Winnipeg Fringe Festival – having appeared here many times.
Last year Melanie found herself being subjected to antisemitic attacks that were initiated by a site supervisor for the Winnipeg Fringe Festival, someone by the name of Eric Rae.
As I wrote on my story about Melanie’s experience, “…on the third day (of the Fringe Festival), she said, ‘the site supervisor (Rae) came and was wearing a pro-Palestinian symbol’ and told Melanie that he was wearing that deliberately because he was coming to Melanie’s venue.
“He told her, ‘that stance you’re taking (on social media) is a political symbol.
Rae also posted on social media: “We have a Zionist in our midst harassing pro-Palestinians.”
There was a concerted effort on social media last summer to boycott Melanie’s shows (She had three different shows altogether.)
As Melanie said during a phone conversation we had last summer about what happened to her, “This is so ridiculous. I’m being harassed and bullied because I’m Jewish…it’s not about Israel.”
Eric Rae was relieved from his duties after Melanie complained to the Fringe office staff, Melanie noted during our conversation.
She adds that other Fringe employees also complained about Eric Rae’s behaviour: “I wasn’t the only one who complained last year,” she wrote in an email sent today. “Several staff members complained, as Eric was not adhering to the Fringe policy that did not allow political symbols to be worn by staff. From what I heard, he refused to stop wearing it, and he did publicly target me. The Winnipeg Fringe upheld their safe spaces policy, and they were wonderful in the way they handled it.”
Further, Melanie was the target of an organized campaign on pro-Palestine social media calling for her shows to be boycotted.
(You can read the full story about what happened to Melanie, also to her mother during last year’s Edmonton Fringe Festival, at Melanie Gall.)
Just today we received another email from Melanie informing us that the same individual who targeted her last summer is targeting her again during this year’s Fringe Festival.
Melanie wrote: “Hi! Thanks so much for the mention in the preview article! I just wanted to let you know that Eric Rae is at it again.”
Attached to that email was a picture taken from Rae’s Instagram account.

As of the writing of this post, Melanie said that she is out of town for three days and is not aware whether any of her posters have been defaced – the way they were last summer.
She did add, however, that “I assume by ‘make her feel unwelcome’ (which is what is written on one of the pictures on Rae’s Instagram account) he is planning something. Ugh.”
Melanie also said that “The one post is too close to a threat to ignore.”
In a subsequent email Melanie also sent a screenshot of an exchange that took place on Rae’s Instagram account between him and someone who goes by the handle “Kat Cat.”

If we hear more about what’s been happening to Melanie we’ll update this article.
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