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
The Jewish Post Ltd. launches new website for food lovers
By BERNIE BELLAN Three months ago I wrote a story about something my daughter, Shira, had started doing on social media that had proved to be wildly successful – much to her own surprise. That story was titled: Local foodie finds fame by trying foods on Facebook Marketplace
What Shira was doing was going on to Facebook Marketplace and trying different foods that she was able to buy from local vendors. She often didn’t know what the heck it was she was ordering, but each time she would get a new food she would film herself reacting to that food.
The results have been consistently entertaining – often hilarious, to the point where Shira now has over 10,300 followers on Instagram, as well as on Facebook, TikTok, and Youtube. (You can find her Instagram page at Winnipeg Marketplace Food Finds.)
I suggested to Shira that she ought to parlay the success she’s found by posting on social media into a further venture: creating a website that would give wider exposure to the food vendors whose food Shira liked the most.
As a result, Shira and I teamed up with the marvellous web designer whose name is Mario Lacunza who is responsible for the design of jewishpostandnews.ca -to create a brand new website called Winnipeg Marketplace Food Finds.
On that website you will find pictures of some of the most popular foods Shira has tried from Marketplace, along with links to the original Instagram posts where she reviewed those foods – and links that will take you directly to the vendors’ Facebook pages.
There are so many brilliantly creative people selling food on Marketplace and Shira’s social media posts have brought many of them a lot of new business. Our hope is that our new website will bring them even more business.
The website will also offer stories about food from a variety of sources. So, take a look at the new site and be amazed at the originality of the foods being produced on Facebook Marketplace.
Local News
UNVEILING for the headstone of Dr. Velimir Kon (Sept. 18, 1950-June 27, 2025)
A true mensch and person of many talents and profoundness, Dr. Velimir (Shlomo) Kon is deeply missed and loved by his family and friends.
Known for his warmth, kindness, integrity and love of learning and teaching, Velimir continues to inspire all who knew him and his memory warms our hearts and souls. Velimir is deeply missed.
You are invited to helps us remember and honour our beloved husband and father who passed away almost a year ago.
We, Branka, Deborah and Lea Kon, wish to inform our relatives and friends of the unveiling of a headstone dedicated to his loving memory on FRIDAY, JUNE 26, 2026 at 11:00am at the HEBREW SICK CEMETERY (2605 McPhillips Street) followed by lunch at the Chabad Lubavitch of Winnipeg – Jewish Learning Centre (1845 Mathers Avenue). Please come say a l’chaim in his honour.
In Memoriam
1st Yahrzeit
In loving memory of Dr. Velimir (Shlomo) Kon who passed away June 27, 2025, 12 Days in Tammuz.
⁃ Forever and deeply loved and missed by his wife of over 50 years, Branka, and daughters Deborah and Lea Kon. Velimir brought joy to our lives with his boundless kindness and gentleness, irrepressible humour, great intellect and love of people, tikun olam and Judaism.
Not a day goes by that we do not mention Velimir and feel his presence with us. Our lives are not the same without him and we deeply miss and cherish him. We can never forget his presence that was larger than life, yet also his humility and thoughtfulness.
A gentleman to the very core, Velimir was respected as a scientist, academic, professor, researcher, and later as a teacher and mentor. He always endeavoured to make every place he worked and lived at better and was able to bridge many cultures. He was Abraham of his generation and made many personal sacrifices; giving up status, position and privilege in order for his family to have a better and peaceful future.
May his memory always be a blessing. He left us at only 74 years young and we wish we had had more time together. Indeed, to know him was to love him.
Local News
Younger Jewish talents continue to shine in their respective categories at annual Winnipeg Music Festival
By MYRON LOVE A number of younger members of our community were repeat stars at the most recent (108th annual) Winnipeg Music Festival – which takes place annually in March. Among the repeat Jewish singers and musicians in the ranks of high achievers this year were” Yale Rayburn-Vander Hout, Gregory Hyman, Alex Schaeffer, Juliet Eskin, Noah Kravetsky, and Lyla Chisick.
Vocalist Yale Rayburn-Vander Hout, the oldest of this year’s group of Jewish repeat winners, was competing in his fifth straight festival, where he continued to build on his accomplishments in previous festivals. This year, the 20-year-old son of Samantha and Peter finished first in two musical theatre categories – songs from musical theatre productions between 1965 and 1999, and shows from the past 26 years. Yale sang “I’m Allergic to Cats,” from the 2016 musical “The Theory of Relativity,” and “Suppertime,” from the 1967 musical, “You’re a Good man, Charlie Brown.”
The former Gray Academy student is currently enrolled at the University of Manitoba’s Desautels Faculty of Music in the Choral program. Yale says that he is hoping to get into the performance track in the fall with the goal of earning a degree in Classical Voice Performance en route to pursuing a career in musical theatre.
As reported previously, Gregory Hyman is a multi-faceted artist who can do it all. The 18-year-old son of Hartley and Rishona Hyman is a singer/songwriter/musician (guitar) who records and performs under the stage name, GMH. His versatility shone through once again in his eighth Music Festival, in which he registered first-place finishes for vocal performances in both “Popular and Contemporary Music” and “TV and Movie Music “categories.
Gregory notes that he was also recommended to compete in the provincial finals in June. The St. John’s-Ravenscourt student (and soon-to be) graduate continues to be busy on stage. In January, he headlined a sold out solo show at Sidestage on Osborne featuring some of his new material. In March, he released an album of his newest songs. Readers can check out his latest compositions on any of the music streaming platforms as well as his own social media (thegmh) on Instagram.
Gregory also continues to host his own podcast: “Talk and Rock with GMH – now in its fifth season – in which he interviews various people in the music business across Canada.
While Gregory says that a musical career is his “dream,” he reports that he is hedging his bets and considering different potential career opportunities. Come September, he will be enrolled at the University of Manitoba in a University One program, which will allow him to select from a variety of courses that can count toward a degree.
Sixteen-year-old Alex Schaeffer won first place this year in the “Musicals Prior to 1965, 16 Years and Under” category with “Try Me” from “She Loves Me,” and was runner-up in the “Musicals 1965 to 1999, 16 Years and Under” category with “On My Own,” from “Les Misérables.” For the son of Marc Schaeffer and Kae Sasaki, this was his fifth year competing in the festival.
The Grant Park High School student made his big stage debut three years ago as Kurt von Trapp in “The Sound of Music,” followed by playing Michael Hobbs in “Elf the Musical” this past winter at the Royal MTC.
Alex recently performed in Grant Park High School’s production of “Something Rotten!” This summer Schaeffer can be seen again at the Winnipeg Fringe Festival, where he will be appearing in a production staged by Rem Lezar Theatre.
Rounding out the voice winners is Lyla Chisick. The daughter of Daniel and Baillee was competing in her second music festival. This year, she scored Gold performances in the “Vocal Solo,” “Manitoba Composers,” and “TV/Movie Musical, 12 and under” categories.
Lyla reports that she began taking voice lessons from Jessica Kos-Whicher three years ago. She says she regularly takes part in the Shaarey Zedek Synagogue Family Service and has sung at several community events. Lyla adds that she is already looking forward to next year’s music festival.
Nate Kravetsky and Juliet Eskin competed in the festival as musicians rather than singers. Juliet, 16, plays the viola, and is also is the violist in the Assiniboine String Quartet. In this, her fifth go-round at the festival, Juliet, the daughter of the musically talented Kelly Robinon and Josh Eskin, had first place finishes in the “Viola Solo, level 8,” “Baroque or Classical Concerto,” and “Romantic Composers” categories.
Juliet originally took up the violin – adding the viola a couple of years after. She also just finished performing in the Grant Park High School production of “Something Rotten!”
Nate Kravetsky is currently in Grade 5 level piano. He studies with Erica Schultz and has been taking lessons from her since age 5.
Nate competed in three categories at the Winnipeg music festival: “Baroque,” “Sonata,” and “Contemporary/own choice.”
His own choice selection was the theme from his favourite video game, “Hollow Knight.”
Nate, who is in Grade 7 at Gray Academy, is also preoccupied preparing for his upcoming bar mitzvah.
We look forward to the continued musical success off Yale, Gregory, Alex, Nate, Juliet and Lyla, and what new talent may be unveiled at next year’s Winnipeg Music festival.
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