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
2026 Winnipeg Limmud to offer a smorgasbord of diverse speakers
By MYRON LOVE There are many facets to the study of Judaism and the Jewish people. The focus may be religious or cultural, historical or Israel-oriented – and Winnipeg’s annual Limmud Festival for Jewish Learning has always striven to cover as many angles as possible.
This year’s Limmud program (now in its 16th year) – scheduled for Sunday, March 15 – is following in that path with a diverse group of presenters.
Limmud’s current co-ordinator, Raya Margulets, reports that all of our community’s rabbis – including Rabbi Yossi Benarroch (who lives most of the year in Israel) – will be among the presenters. Topics to be covered by local experts encompass midrash, Jewish identity, antisemitism, conversion, biblical archaeology, textiles, parenting, art, and more.
But it wouldn’t be Limmud without interesting input from out of town personalities.
Perhaps the most prominent of the guest speakers who are confirmed is Yaron Deckel, an Israeli journalist and broadcaster who is currently the Jewish Agency’s Regional Director for Canada. According to a biography provided by Margulets, Deckel is a highly respected Israeli journalist widely known for his insight into Israeli politics, media, and society. Between 2002 and 2007, Yaron served as Washington Bureau Chief for Israeli Public Television. In that role, he covered U.S.–Israel relations and American politics, also interviewed three U.S. presidents: George W. Bush, Bill Clinton, and Jimmy Carter. As well, Deckel produced two acclaimed documentaries: “The Israelis” (about the lives of Israelis in North America), and “Jewish Identity in North America.”
From 2012 to 2017, he served as Editor-in-Chief and CEO of Galei Tzahal (IDF Radio), Israel’s leading national public radio station. He also hosted a prime-time weekly political show.
As a senior political correspondent and commentator for Israeli TV and radio, Yaron has covered the past 14 Israeli election campaigns and maintained close relationships with top political and military leaders in Israel. He conducted the last interview with Prime Minister Yitzhak Rabin—just 10 minutes before his assassination.
Decker is slated to do two presentations. In the morning, he will be speaking about the crossroads that Israel finds in the Middle East currently and what the challenges and possibilities may be.
In the afternoon, his subject will be “Israel after October 7 and the Iran War “ and what may lie ahead.
Also coming in from Toronto are Atarah Derrick, Achiya Klein, and Yahav Barnea.
Barnea is an Israeli-Canadian educator and community builder based in Toronto, with over a decade of experience working in Jewish and Israeli education, engagement, and community development.
Originally from Kibbutz Shomrat in Israel’s Western Galilee, Barnea’s outlook on life has been shaped by kibbutz values and her involvement in the Hashomer Hatza’ir youth movement.
She currently serves as the North America Regional Program Manager for the World Zionist Organization’s Department of Irgoon and Israelis Abroad, where she leads initiatives that strengthen connection, leadership, and communal life among Israelis living outside of Israel..
Barnea holds a Master of Education in Adult Education and Community Development, with a focus on intentional communities, as well as a Bachelor of Education specializing in Democratic Education, meaningful, values-based communities.
Her presentation will be titeld “A Kibbutz in the City – Intentional Communities and Immigration.”
Atarah Derrick is the executive director of the Israel Guide Dog Center for the Blind, an organization that is dedicated to improving the quality of life of visually impaired Israelis. The charity, the only internationally accredited guide dog program in Israel, was founded in 1991, and today serves Israel’s 24,000 blind and visually impaired citizens.
Achiya Klein is one of the guide dog centre’s beneficiaries. The Israeli veteran was an officer in the IDF combat engineering corps’ elite ‘Yahalom’ unit. In 2013, while on a sensitive mission to disable a tunnel in Gaza, an improvised explosive device was detonated, severely injuring Achiya and robbing him of his vision.
He has been a guide dog client since 2015.
Klein has not allowed his disability to limit his abilities. He competed for the Israeli national team at the Paralympic rowing championship in the Tokyo 2021 Olympics.
He also earned a Masters Degree in the Lauder School of Government, Diplomacy and Strategy in Counter Terrorism and Homeland Security,at IDC Herzliya.
Klein is married and a father to two boys.
Coming back for a second successive year is Dan Ronis from Saskatoon. A plant breeder and geneticist, Ronis has taken a quite different approach to studying Torah. He has sought out the help of a medium to discern the back stories of Biblical figures.
For readers who may be unsure of who or what a medium is, think Theresa Caputo of television fame. Mediums claim to be able to converse with those who have passed on through a spirit guide. While many may be skeptical, there are also many believers.
Last year Ronis focused on women who played a prominent role in the Torah. This year, he will be discussing the “untold story” of Adam and Eve.
Readers who may be interested in attending Limmud 2026 can go online at limmudwinnipeg.org to register.
Local News
Second annual “Taste of Limmud” a rousing success
By MYRON LOVE “A Taste of Limmud” returned for a second go-round on Thursday, February 19, and I have to commend both Raya Margulets, Winnipeg Limmud’s co-ordinator, as well as the Shaarey Zedek Synagogue’s catering department, for an outstanding culinary experience delivered with flawless efficiency.
“Tonight’s Taste of Limmud showcases our diversity as a community and our unity as we come together to break bread,” observed Rena Secter Elbaze, Shaarey Zedek’s executive director, just prior to leading the guests in hamotzi.
The evening featured a sampling of Jewish staple dishes representing Jewish life in six different regions where Jews had settled over the centuries. The choice of dishes also reflected how diversified our Jewish community has become over the past 25 years.
In her opening remarks, Margulets welcomed her 130 guests. “After last year’s success,” she said many of you asked us to bring it back, and we’re delighted to do so, so welcome again. Today’s celebration is all about sharing stories, connections, and flavours, and it is brought to you in partnership with Congregation Shaarey Zedek and with the support of the Jewish Foundation of Manitoba.
“We would like to take a moment and express our heartfelt gratitude to Congregation Shaarey Zedek for their amazing partnership, to Joel, the Head Chef at Shaarey Zedek, and his fantastic staff for their contributions, and to all the volunteers who made tonight possible,” Margulets said.
“Thank you all for joining us tonight. Savour the flavours, the stories, and the connections as we celebrate the richness of Jewish cuisine and community together.
“Whether you’re returning or attending for the first time,” she continued, “we’re excited to stir up a wonderful evening with old and new friends. Some of you may have realized it already, but the name Taste of Limmud has a double meaning. While, yes, this event is all about taste and sampling Jewish flavours from around the world, it is also a tiny glimpse, in other words, a taste, into our established annual Limmud Festival.”
Limmud, she explained – the Hebrew word for “learning”, is a volunteer-run organization that celebrates Jewish learning, thought, and culture. It’s a conference where participants have a choice of dozens of sessions led by rabbis, scholars, artists, authors, and community members. At Limmud, everyone can be a teacher and a student, in other words, more fitting with tonight’s theme, everyone has something to add to the recipe.
Margulets then introduced the “talented cooks from our very own community who prepared the dishes”: Mazi Frank, who presented a “delicious” Mussakah, a Turkish classic; Adriana Vegh-Levy and Karina Izbizky who brought a “tasty” Pletzalej, a type of bread that the forebears of today’s Argenitnian Jewish community brought with them from Poland; Karen Ackerman, with a special Hard Honey Cake; Naama Samphir, who presented a tasty Yemenite Hawaij soup (and that’s right – Hawaij – not Hawaii; Hawaij is Iraqi); Kseniya Revzin ,sharing a rich Kubbete, a savory pie from the Crimean Karaites; and Ruth Harari, (who wasn’t able to join her sister cooks) who had prepared Mujadara, a flavourful lentil-and-rice dish from Aleppo, Syria.
“We would like to take a moment and express our heartfelt gratitude to Congregation Shaarey Zedek for their amazing partnership, to Joel, the Head Chef at Shaarey Zedek, and his fantastic staff for their contributions, and to all the volunteers who made tonight possible,” Raya Margulets concluded.
“Thank you all for joining us tonight. Savour the flavours, the stories, and the connections as we celebrate the richness of Jewish cuisine and community together.”
The six samplings were dished out – one at a time – in either small paper plates or cups with the paper removed after each tasting.
The first recipe to be presented was pletzalej onion bread. As was the pattern for each tasting, the first food presented was preceded by a brief overview of the history of Argentina’s Jewish community and its connection with its local contributor, followed by a plezelaj bun with a piece of meat inside .
Next up was a taste of Hawaij soup, a Shabbat and Yom Tov staple of Yemen’s former centuries-old Jewish community, most of whom are now in Israel. The soup included piecesof chicken, potatoes, onions, carrots, tomato and several spices. Hawaij is a spice mixture consisting of cumin, black pepper, turmeric and cardamom.
Mussakah comes from Turkey – also a homeland for Jews for hundreds of years. It is a mixture of layered eggplant, beef, savoury tomato sauce and spices and is typically served with rice or a piece of bread.
Mujadara is a product of the ancient Syrian city of Aleppo, one of the world’s oldest cities and formerly home for thousands of years to a once thriving Jewish community. The recipe calls for lentils, basmati rice, onions and spices.
Kubbete is a puff pastry originally from Crimea, where the local Jewish community picked it up from the surrounding Tatar population. The pastry is filled with beef (as was the case that evening) or lamb, onions, potatoes and peppercorn, with paprika added for taste.
The last item on the menu was hard honey cake. “This was my baba’s recipem which she brought with her from Ukraine in the 1920s,” noted Karen Ackerman. “Jews like my baba (Chava Portnoy) have lived in Ukraine for over 1,000 years and they used the local buckwheat honey in their honey cake.
“I am honoured to be able to share this recipe with you,” she said.
All the presenters spoke of how the recipes that had been passed down through the generations connected them with home and family and memories of their babas.
I once had a cousin who, after enjoying a hearty meal, would say: “Good Sample. When do we eat? Well, after the sampling, it really was time for a late supper – the main course – and it was a perfect way to end the evening feasting on pita filled with veggies, falafel balls and humus and French fries with a choice of coffee cake or chocolate cake for dessert.
I ‘m really looking forward to next year’s “Taste of Limmud”.
Local News
New kosher caterer providing traditional Israeli foods for Winnipeg palates
By MYRON LOVE The Israeli community in Winnipeg continues to grow and enrich our community. Among the most recent arrivals are Maxim and Olga Markov – along with their children, who settled here less than two years ago. What the Markovs are contributing to our community is a new kosher catering operation – Bravo Good Food – that specializes in traditional Israeli fare.
The senior Markovs are both originally from Ukraine. They came with their families in the early 1990s when they were young teenagers. For the last several years before moving to Winnipeg, they lived in Afula in north central Israel.
After their arrival in Winnipeg, Olga worked for a time in the Chabad kitchen; Yural still works in the Chabad daycare – while Maxim took a job with an HVAC company.
Maxim’s passion however, and his life’s work has been in food preparation. He points out that he worked in the business for 17 years in Israel. In the early part of his career, he was head chef in a dairy restaurant. He was also a cook in wedding halls preparing food for as many as 1,000 guests.
In more recent years, he worked in a private hospital kitchen where, he notes, he gained experience with dietary menus and healthy food options.
“What we do at Bravo,” he says, “is provide our clientele with the authentic taste of the Middle East. We cook traditional dishes, using only fresh ingredients, with our own original recipes.”
Operating out of the Adas Yeshurun-Herzlia kitchen, Bravo’s menu (which readers can view on its website – bravogoodfood.com) features such well known Israeli items as falafel balls and humus, mini shislek (with chicken) on skewers, beef kebabs on cinnamon sticks, and friend eggplant with tahini.
But there is much more to choose from.
Start with salads.
You can choose from coleslaw, purple cabbage salad, beet salad with pears, celery and parsley, mushroom salad, and green herb salad.
Main course options include beef meatballs and tomato sauce with a trio of fish dishes – salmon, Moroccan fish, and custom fried fish. Also available are a broccoli casserole, pasta, and spaghetti.
Bravo also offers a corporate menu featuring a choice of continental or executive breakfast, full breakfast buffet or a buffet of mini sandwiches – and an events menu.
Maxim adds that Bravo offers vegetarian, vegan and gluten free options.
Olga notes that individual dishes or baking can be ready for the next day. “If it’s a small event like a family dinner, we need at least three days in advance, provided the date is available,” she says. “If it’s a large event – then we need at least a week in advance notice.”
“We are not just providing food,” Maxim says. “We are creating an atmosphere. Our catering makes your event unforgettable through taste, freshness and hospitality.”