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
Fringe Festival star Melanie Gall to appear at Gwen Secter Centre July 16
By BERNIE BELLAN A veteran performer at the Winnipeg Fringe Festival, Melanie Gall, will be making a special guest appearance at the Gwen Secter Centre on Thursday, July 16.
Melanie will be the featured speaker (and entertainer) for the Remis Speakers’ Series that day. The Remis Speakers’ Series is held every Thursday starting at noon and ending at 1:30. This year’s series began May 7 and will continue through the end of October. This year it has been attracting increasingly large audiences – ranging from 40-60 people, as it offers attendees the opportunity to enjoy a delicious – and kosher lunch, while listening to a very diverse variety of speakers – all the way from Gail Asper talking about returning the Ten Commandments to Assiniboine Park to Rabbi Matthew Leibl performing Christmas songs that were written by Jewish songwriters. At the same time it provides those attending a chance to make new acquaintances – or perhaps bump into old friends they haven’t seen in a long time.
Melanie Gall’s own story is sure to be riveting. I’ve written about Melanie in the past, but the past two summers had been especially nerve wracking for Melanie, as she was subjected to a torrent of antisemitic abuse over her support for the State of Israel.
You can read my story about what Melanie went through during the Winnipeg Fringe Festival – both in 2024 and again last year, at Melanie Gall subjected to antisemitic abuse.
Melanie, who will be entering her 13th year of performing at the Winnipeg Fringe Festival, will be peforming in only one show this year – a departure from her past practice of performing in multiple shows (as many as three different shows) during the Fringe Festival.
Elsewhere on this website we’ll be offering a preview of Melanie’s show (which is called “The Ballad of Isobel Gunn” and which is based on an incredible, but true story), along with previews of several other shows.
In the meantime, if you’re not already a member of the Remis Speakers’ Series group, but would ike to attend this coming Thursday, simply email us at jewishp@mymts.net and we’ll reserve a spot for you. The cost for the lunch is only $20.
The Gwen Secter Centre is located at 1588 Main Street (corner of Smithfield). There is parking available on a lot behind the centre or on the street.
Local News
Folk Festival Report
(Posted July 10) During this year’s Winnipeg Folk Festival we’re going to be running an ongoing blog report – with photos and blurbs from the festival, sent to us by our Folk Fest correspondent Heather Silbert.
Here’s Heather’s first entry (sent Friday at 3:33 pm): “It’s a hot hot day at the 51st Winnipeg Folk Festival! Lots of people; lots of good vibes; and an abundance of awesome music!!”
“We just moved to spruce hollow. Nice and shady. listening to Jacob Brodovsky.”
4:21 pm: “Jacob just announced that he lost his job and received a lot of vitriol from the Jewish Community because he’s a Jewish person who believes that Palestinian and Jewish lives are intertwined, and he is against genocide. He is very deeply feeling, and expresses all these big feelings through his songs. I want to give him a hug, but it’s so hot outside!”
5:33 pm: The inscription in the plaque below begins with some lines from a Bruce Cockburn song called “Joy Will Find a Way (A Song About Dying)”: and continues with: “Memory Lane honours those who are no longer with us but whose presence lives on in the music, memories and moments we share here…”
7:06 pm “Gorgeous hand made polymer clay jewelry! Amanda Greisman makes gorgeous pieces that can be worn across many occasions! And she’s so so nice!” (See her booth called “Blue Sky Jewelry.”)
(Posted July 11, 4:20 pm) “Would you drive your bike to BHP for FF in this weather? I would drive here, but not sure if I’d have enough steam to bike home!”
“There’s aren’t any flower/leaf art installations this year(that I’ve found!) but loving the fairy village!!”
“It’s another sweltering day. Bright blue sky and a light Breeze. Cat Clyde is rocking it out at Bur Oakbank!! Loving it!!”
8:04 pm: “Snacktime! Excellent energy, good time! We’re sitting 2 tarp rows in front of the frog to the left of the Canadian flag. (Total FF directions! LOL!)”
Local News
New GrowWinnipeg “Grow Together” highlights diverse origins of our growing Jewish community
By MYRON LOVE On Monday, June 11, about 120 younger Jewish Winnipeggers from diverse backgrounds came together at the Asper Campus for an evening of food and music, games and prizes and, most important, the opportunity to socialize with their peers from a growing community that reflects the long term success of our community’s 26-year-old GrowWinnipeg initiative.
“We are gathered here to celebrate your and your parents’ decisions to come to Winnipeg, build families and raise families here,” noted Dalia Szpiro, GrowWinnipeg’s director, in addressing the young adults in attendance.
To summarize, the GrowWinnipeg Initiative arose when our past community’s leadership recognized that our Jewish population was an aging and shrinking community with aging infrastructure.
The first stage 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. The initiative, which was officially launched in 2000, is unique in its efforts to reach out to young Jewish families throughout the Western world.
The first outreach efforts were directed at Argentina’s sizeable Jewish community at a time when the South American country’s economy was going through a very difficult period. Several of our community leaders visited the Jewish community in Buenos Aires and a website was established. Arrangements were made for local families to host Jewish Argentinians here on exploratory visits and the community helped the prospective immigrants navigate the then new Provincial Nominee Program, find jobs and establish themselves here.
Since then, many young families – from Argentina, as well as a great number of other countries – have chosen to make Winnipeg their new home. The young people at the recent GrowWinnipeg evening were reflective of the diversity of our growing community. During the course of the evening, I had the opportunity to speak with not only Israeli-born participants, also young people from Russia and Ukraine, Turkey and Uruguay – and a young lady who grew up in Ottawa.
Naomi Kirshenblatt Palansky originally came here from Ottawa to go to university. She met and married local entrepreneur Noah Palansky in 2023. (We wrote about Noah in the December 19, 2025 issue). That same year, the former competitive swimmer who competed in the Maccabiah Games in 2009 and 2013 served as manager of the Canadian Junior swimming team participating in the games. She is currently the director of operations and strategy for a company called CoinFlip.
Although born in Montevideo, Uruguay, Yael Borovich grew up in Winnipeg. She is the daughter of Dalia Szpiro and Eduardo Borovich (and younger sister of Vanessa) all of whom moved here in 2002. She is a graduate of the Asper School of Business and works as a senior client relationship manager for Scotia Bank’s commercial branch.
Siblings Igal and Edem Avimelek arrived here from Turkey six years ago with their parents, Etel and Moris. Edem is in her second year at the University of Manitoba while Igal is studying engineering at UBC.
They report that their father, Moris, has established the Upperwear Textile Agency – marketing textile products online – while their mother Etel, is senior IT Director, software development and data analytics and enterprise architecture at Standard Aero.
“Our parents were looking to move to a new country and came across the GrowWinnipeg webpage,” Edem says. “GrowWinnipeg has been really supportive of us in helping us move here and become established.”
More recent arrivals Alex Tsmokaliuk and Jane Hin are from Ukraine and Russia respectively and have been together since 2022. “We were looking for a peaceful place to start a family,”: Alex says. “We heard about GrowWinnpeg and here we are.”
Alex is a fitness trainer while Jane is working for WRE Development as a property manager.
Dora Bronstein, who is originally from Beersheva, is also a recent arrival to our community. “I came to Winnipeg because I wanted to get away from war – and I heard about GrowWinnipeg,” she says.
She is currently working for L.C. Taylor Licensed Insolvency Trustee as an estate manager.
Erele Tzidon and Daniel Mejnov
Last October, GrowWinnipeg introduced its new Youth Ambassadors program.
“Since October, we have been working to create an organized system and opportunities to help young newcomers find their people within our community,” wrote Youth Ambassador Erele Tzidon on Facebook.
“Our mission is to help young immigrants find a sense of home in Winnipeg and support a smooth and welcoming transition.
We are excited to help bring our young Jewish community together.
As reported in the Jewish Post about 18 months ago, Tzidon is originally from Moshav Ginaton in central Israel. She came to Winnipeg in 2018 with her parents Ofer – formerly regional manager for a car rental agency in Israel and now an RBC branch manager – and Sharon – an emotional therapist in Israel who is currently working as an educational assistant at Gray Academy – and three younger brothers.
The 20-year Gray Academy graduate has recently completed her third year in Science at the University of Manitoba. For the past three years, she has also been a member of Dr. Inna Rabinovich-Nikitin’s research team at the Institute of Cardiovascular Sciences (ICS), researching the link between pregnancy complications and the risk for heart disease.
In November, 2024, Tzidon was presented with the Dr. James S. McGoey Student Award – based on the quality of her cardiovascular research at the ICS, which operates out of the St. Boniface Hospital campus’s Albrechchtsen Research Centre.
Tzidon’s fellow Youth Ambassador is Daniel Mejnov. He was born in Beersheva but moved to Winnipeg with his parents, Dennis and Victoria (and younger brother Alon) 14 years ago. He is currently enrolled in an IT program at the University of Winnipeg.
Mejnov welcomed all those in attendance at the celebration and thanked the volunteers who helped him and Tzidon organize the event.
“It has been great being able to bring so many people together,” he said. “This is a good way to unite our community.
Two other individuals of particular note that I spoke with at the event were Orit Agabayev and Alina Plis, partners in three year old A and O Event Décor, who provided the balloon arches and walls, table settings and centre pieces for the evening.
Agabayev is originally from Netanya and Plis is from Yeruham (in southern Israel). The latter has been here for 18 years and operates a daycare. The former came 16 years. Her principal career is working in the field of animal nutrition.
In an Instagram PosI from four years ago, Plis noted that “I have always been passionate about planning parties and events. I started out with planning big surprise birthday parties for my kids. Eventually I began planning and decorating events for family and friends. Now I am taking the next step with my friend, Orit, who shares the same level enthusiasm as me. What drives me to go above and beyond is simply the excitement my creations bring to those who see my work.
On Facebook, Agabayev added that “Alina and I are so excited to start A&O event decor. We both love decorating and planning different events. We hope that you can put your trust in us to create or decorate an event for you. We do Birthday parties, anniversaries, bachelor/bachelorette parties, proposals, weddings and more..
“Message us with your ideas to get a free quote and you’re one step closer to having an unforgettable event.”
