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

The Jospeh family (clockwise from top left): Mark, Jennifer, Edison, Darwin

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

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A response to Isha Khan’s op-ed in the August 1st, 2026 issue of the Winnipeg Free Press

Isha Khan , CEO of the Canadian Museum for Human Rights

By SIMONE COHEN SCOTT Ed. note: Isha Khan is the CEO of the Canadian Museum for Human Rights. In the August 1st issue of the Winnipeg Free Press Ms. Khan wrote an op-ed defending the museum’s decision to mount the exhibit titled “Palestine Uprooted: Nakba Past and Present.” The Free Press has published many letters about the exhibit, but some readers of that paper are frustrated that their letters were not published. We were asked by Simone Cohen Scott whether we would print a letter that she had sent to the Free Press, but which was not published.
Since there is always room on this website to publish as many articles as we’d like, we agreed to publish Simone’s letter, which follows here:


Isha Khan states in her op-ed piece that the choices of what to exhibit, what to examine, what to feature, were made according to certain parameters, which she called a “framework.” What, specifically, comprised this so-called framework? It is obviously exclusive of elements relative to the history of the period displayed. She said the purpose of the exhibit was….”to promote reflection and dialogue.” Reflection and dialogue about what? Did the Arabs who left the area know that the United Nations had offered them a state too? If they had known, would they have wanted to accept? If, given the choice, would they have stayed and lived beside the Jews? Or, did they indeed, want five Arab nations to attack the Jews? Such questions as these would have promoted “reflection and dialogue.”

What is the understanding implicit in the exhibit? Khan quotes from a banner that hangs in the museum: Article 1 of the Universal Declaration of Human Rights, “We are all born free and equal in dignity and rights.” Should the Jews have rights? If so, what should they be? May they have a state? When a people is attacked by 5 nations, as Israel was in 1948, wherein lie the human rights?

Why did Khan’s advisors choose to use the word Nakba in the exhibit title? The original use of the Arab word ‘nakba’, meaning disaster, was intended to depict, that in spite of being assured by the Arab/Islamic leaders that it would be a quick war and that they would win, that did not happen. The word disaster was meant to mean the shock and the disappointment. The real disaster, or tragedy, ‘Nakba’ if you will, is that the Arab/Islamic countries in the world, (and there are plenty of them), have refused to welcome refugees of a war their own leaders chose to start. They have allowed these displaced persons to stagnate in UNRWA, an industry in itself. Where are the stories of the people in UNRWA housing? Another group it would have been enlightening to hear from is today’s Israeli Arab population – the doctors, dentists, nurses, lawyers, judges, entrepreneurs, business moguls and more, the descendants of those who stayed in the country in 1948, who had and whose offspring have had the same opportunities as every Israeli citizen. There is much easily accessible research that has been neglected in the preparation of this exhibit. This blatant lack of effort is shameful.
Kahn explained, when asked, that the context of the conflict of the time is too complex to have been included. Is she saying that people who go to museums can’t handle broad, multi-faceted ideas… that she deliberately designed a walk-though soundbite, not a process for mind-expanding grasp of history?

Simone Cohen Scott,
(sent to the Free Press August 13th, 2026)

Post script from Bernie Bellan: This website has never refused to carry any post that may be critical of the CMHR, despite what some readers of this website might think. We do allow comments to articles, but anyone commenting through our “Comment” portal has to register by giving their name and email address so that we can confirm they are a real person. In addition, we welcome longer contributions from readers. Many of the posts you will find on this website come from regular contributors, such as Henry Srebrnik. If you have something you’d like us to consider publishing – and the only criteria are that it be reasonably well written and void of slanderous remarks, email to us at jewishp@mymts.net.

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Young Winnipegger Dr. Yale Michaels receives $550,000 Canadian Cancer Society research grant

By MYRON LOVE It has been shown on many occasions that a teacher can have an outsized role in shaping a young person’s life.  Dr. Yale Michaels’ life story is one example.
During a recent interview with the young cancer researcher – the son of John Michaels and Karen Stern – Yale recounted how a Grade 7 teacher at Grant Park High School was largely responsible for his decision to pursue a medical career in medicine.
The young Michaels attended Brock Corydon Elementary School and was a long time Massad camper.  In junior high school at Grant Park, however, he recounts, “I was having a tough time staying on task. Thankfully, my Grade 7 science teacher suggested that I might find it interesting volunteering to help in a cancer research lab.  He had a contact and got me in.  I loved it. It was a good fit for me.  I never looked back.”
Michaels (whose zaida, Leon Michaels, was a leading cardiologist here) spent much of his free time during his high school years volunteering in the lab.  After graduation, he enrolled in Harvard –with help from the university’s financial aid program – where he earned his Bachelor’s degree.   He followed that up with a Ph.D. from Oxford in 2019, followed by three years as a  post-doctoral Fellow – before returning to Winnipeg in 2023 to work at Cancer Care Manitoba, as well as teach at the University of Manitoba.
“I enjoyed my time both at Harvard and Oxford,” he says.  “What made England even more enjoyable is that Yale has family there. His grandparents – Leon and Joan Michaels – were born and raised in London and Yale’s time there overlapped for a few months with his brother Jamie (about whom there was a story in a July issue of the Post), who  earned his Master’s Degree in Creative Writing at the University of London.  
This past June, the young researcher learned that he was to be the recipient of a $550,000 Canadian Cancer Society Emerging Scholar Research Grant, covering five years of research.
Michaels’ field of research focuses on new ways of combating blood cancers – specifically in the new area of immunotherapy.   He is being aided in his research by lab tech Dana Segal and graduate student Serena Dembowksi.
Michaels adds that he is collaborating with a number of other researchers from Winnipeg – and throughout Canada, including Drs. Harinad Maganti, David Szwajcer, Jody Haigh, Versha Banerji, and David Knapp. 
 Using the patient’s own immune cells – specifically CAR T cells -to treat blood cancers was first approved in 2017, Michaelsreports.  “The treatment has shown itself to be really successful.  Many patients go into remission and some may have the potential to be cured.”
One of the drawbacks, he explains, is that the treatment is prohibitively expensive.  Each dose costs about $500,000 U.S.
“What we are trying to do in my lab and elsewhere is find a way to greatly reduce the cost,” he explains.  “It becomes a matter of scale.  Other drugs used in treating cancer can be produced in amounts of 1,000 doses per production run.  But right now CAR T therapy is made on a one-off basis with an individual manufacturing run for each patient. We are attempting to instead make CAR T cells from stem cells – which can be grown in large quantities. We are trying to use genetic engineering  to manipulate them so that they can be administered safely to patients.
“We (Michaels and fellow researchers) are making good progress in this area,” he adds.
He cautions that the research is still in the formative stages and that clinical trials are still several  years away.  “Our research so far though has shown that our treatment would seem to be effective at killing cancer cells,” he reports.  “This grant from the Canadian Cancer Society will help us to further that research.”
Outside of work, Michaels notes, much of his time is spent with his family – Dr. Allison Marmel and their two-year-old daughter, Rose.
(Ed. note: We should note that Yale Michaels was also the punter for the Harvard University football team – by far his greatest achievement.)

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Rabbi Kliel Rose, Etz Chayim’s spiritual leader, taking a new position in Ottawa

By MYRON LOVE It is with mixed feelings that Rabbi Kliel Rose, the spiritual leader of Congregation Etz Chayim for the past eight years, is once again leaving the community in which he grew up. Immediately after Yom Kippur, he, his wife, Dorit Kosmin, and three of their five children are moving to Ottawa, where Rabbi Rose is to become the spiritual leader of Congregation Kehillat Beth Israel (popularly known as KBI).
“My time in Winnipeg has been wonderful,” Rabbi Rose says. “It has been a privilege to have served as Etz Chayim’s rabbi and be part of the Jewish community here. Our Jewish community has a sense of solidarity that is unlike any other Jewish community in North America.”
He wasn’t actually looking to leave, Rabbi Rose explains. “Last spring, I was just having a cursory look at postings for Conservative rabbis and KBI stood out. What attracted me was not simply the opportunity to serve a larger congregation, but the chance to lead a community with such a rich history and such a strong commitment to egalitarian Conservative Judaism, Jewish learning, inclusion and community engagement. KBI is a relatively young congregation that brings together more than a century of Jewish history in Ottawa, and I was very drawn to the opportunity to help shape its next chapter.”
KBI, Rabbi Rose reports, was created in July 2016 through the amalgamation of two long-standing and storied Ottawa congregations: Agudath Israel and Congregation Beth Shalom. The merger brought together the rich traditions of both communities to create a modern, egalitarian Conservative congregation. Today, KBI is the largest Jewish congregation in Ottawa, serving more than 500 families, with a strong emphasis on Jewish learning, inclusion, community engagement and youth and family programming.
“There is a tremendous amount of energy and possibility at KBI,” Rabbi Rose says. “It is a community with deep roots, but also a very strong desire to think about what Jewish life should look like in the future. That is exciting to me as a rabbi.”
As with many rabbis, Kliel Rose’s career path has been a long and winding road. The son of the revered Carol and Rabbi Neal Rose, he first left Winnipeg after graduating from Grant Park High School.
In an interview with the Jewish Post & News in 2018, shortly after he returned here to serve Congregation Etz Chayim, Rabbi Rose credited his parents with being tremendous role models. “They are a dynamic team,” he commented, “but they never pushed any of us (Kliel Rose is the middle child in a family of four brothers and one sister) in any particular direction. They were really nurturing. They were okay with anything we decided as long as we were passionate about it.”
For the longest time as a young man, he noted, he fought against going into “the family business”. But, he said, working in Jewish summer camps, people in leadership positions in the camps saw something in him and convinced him to pursue rabbinic ordination.
Thus, after graduating with a Judaic Studies degree from Gratz College in Philadelphia, Kliel Rose enrolled in the Jewish Theological Seminary.
He noted that the most important piece of advice his father gave him before he enrolled in a rabbinic studies program was the suggestion that he should work for a time in a large congregation to see what it is like – “both the joy and the underbelly,” as he put it.
“I took his advice,” Rabbi Rose said. “For two years, I worked under the umbrella of a special fellowship at Bnai Jeshurun Congregation in Manhattan. The congregation had 4,000 members at that time. It had been a dying congregation which had been revitalized by Rabbi Marshall Meyer, who had previously helped revive Jewish life in Argentina. Rabbi Meyer, with his vision of social justice, was an inspiration for me.”
Rabbi Rose also spent a year at an Orthodox yeshiva in Israel and a couple of years as a youth director at a large Conservative congregation on Long Island.
Before coming to Winnipeg, Rabbi Rose served congregations in Miami Beach (for three years), Nashville (for five years), and Edmonton (for five years).
The past eight years at Etz Chayim have certainly brought their share of challenges, but Rabbi Rose says they have also been deeply meaningful. Just two years after arriving, the COVID pandemic transformed congregational life. Then there was the congregation’s decision to sell its 70-year-old building on Matheson Avenue and move to a smaller facility in south Winnipeg – a process that was completed just over two years ago.
“It has been really challenging these past few years,” he recounts. “It was difficult leaving behind our old building with so much history. But I think Etz Chayim made the right decision, and I am proud of how our community came together to navigate these challenges and build a new future for the congregation.”
Rabbi Rose says he is particularly grateful for the relationships he has built during his eight years at Etz Chayim and throughout Winnipeg’s Jewish community. “There have been so many meaningful relationships and experiences during my time here. I feel very fortunate to have had the opportunity to serve this community and to have been part of Etz Chayim’s story during such an important period of transition.”
“I’m leaving with an enormous amount of gratitude,” he adds. “Etz Chayim has given me the opportunity to grow as a rabbi and as a leader, and I hope that I have been able to contribute something meaningful to the congregation and to the wider Winnipeg Jewish community in return.”
Another factor that made Rabbi Rose’s decision to leave difficult is that his parents moved back here two years ago and his older brother, Carnie, returned about 18 months ago to become Shaarey Zedek’s senior rabbi.
“It has been wonderful having my parents and brother here,” Kliel says. “This has been the first time that my children have had grandparents and an uncle and aunt in the same city.”
The Rose family will also miss the many friendships and connections they have made in Winnipeg.

Dorit Kosmin (& Elula)

Our community will also miss Kliel’s wife, Dorit. “My wife is a talented and caring individual who has worked in different areas of the community,” he notes. “Most recently, she was working in spiritual care at the Simkin Centre. She has made a tremendous contribution to the community and will certainly be missed.”
For Rabbi Rose, the decision to leave Winnipeg is less about leaving something behind than about embracing a new opportunity. After eight years of helping Etz Chayim navigate a period of profound change, he says he feels ready to take on a new leadership challenge while carrying with him the lessons and relationships he has gained here.
The Rose family will be leaving two days after Yom Kippur. Kliel reports that they have sold their house and have just a few things to wind up.

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