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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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Local News

Former Winnipegger Adam Druxman living the Hollywood  dream

By MYRON LOVE A dwindling number of Post readers may still remember the song “You Ought to be in Pictures.”  Adam Druxman may not be in “pictures,” but his life’ s work is the next best thing.  For almost 40 years, the former Winnipegger has had the privilege of being behind the camera helping to make magic happen.
“I always loved the movies,” says the son of the late George Druxman and the recently deceased Joan Druxman. But, growing up in Winnipeg (Old Tuxedo largely),” he recalls, “the prospect of actually having a career in movies in the ‘80s was quite a reach.”
As a young adult, the closest Druxman came to the movie business was working for Adi’s Video Shoppe (which most of us of an older generation will no doubt remember).  Ultimately, it was a chance exposure to the Winnipeg Film Group that turned out to be his entry into film production.
The young, aspiring filmmaker signed up in 1988 to take a course in filmmaking – through the WFG – with acclaimed Winnpeg-based filmmaker John Paisz.
“From John, I learned to write, shoot and edit a film,” Druxman recalls.  “At that moment, I knew this is what I wanted to do.”
With a grant from the National Film Board of Canada and the WFG, the young filmmaker created a five-minute film called “The Guinea Pig Age,” a satirical look at how humans have become test subjects for products and the environment.
The next evolution in Druxman’s pursuit came in 1989 with a move to Toronto where he hoped to enrol in Ryerson’s film program.  “I decided in August that I wanted to go to film school, but it was way too late for enrolment,” he recounts.  “I wasn’t able to get into the program until the following year, but I decided to move to Toronto anyway.  That was my first time living away from home. I enrolled in some night courses and and also began looking for a job.”
He was, he says, encouraged to seek work in the industry as a production assistant – essentially a “gofer”, he points out. “I didn’t know that was a thing I could do. So I send out 1,000 resumés –with nothing on them because  I didn’t have any experience.”
His break came when he got a call at 2:00 A.M. from a production company looking for a production assistant.  “My roommate, Shanno Zaslov, answered the phone,” he recounts.  “She was so excited that I had received a call that she told them not to contact anyone else while she tried to find me at a surprise birthday party.  After that first job, I never looked back.”
Over the past nearly 40 years, Druxman has never  been out of work for long.
His first credited role – as third assistant director – was in a 1992 production called “Stay Tuned, shot” in Vancouver. It starred Pam Dawber (of “Mork and Mindy” fame) and the late John Ritter.  Druxman’s responsibilities included organizing the extras,   maintaining quiet on the set, blocking out pedestrians and outside traffic during a take, helping to ferry actors between their trailers and the set, and alerting the performers.
After that movie, Druxman moved to Los Angeles.  He was soon promoted to second assistant director and – four years later – was promoted to first assistant director  – a role he has performed with distinction ever since.
“ As first assistant director,” he continues, “in prep, you manage scheduling, logistics, day-to-day operations and locations. During the shoot, you run the set, give cast and crew their call times, deal with issues such as weather delays, safety on the set, and manage the time of the shooting day.”
Among the better known movies that Druxman has been involved with  have been: Adam Sandler’s “The Waterboy,” “50 First Dates,” “Boogie Nights,” “Transformers,” “Magnolia,” and two of the “Super Trooper” films.
Some of the TV series that he has worked on have included: “Weeds,” “Prison Break,”  “Fargo,, Dark Matters,” “Las Vegas,” and “Cosmos: Possible Worlds” – a remake of the popular series first created by Carl Sagan 45 years ago.
 “The crazy  thing about living in LA,” Druxman observes, “is that I could drop in at any random Starbucks for a cup of coffee and run into a writer or director who might ask if I am available for a movie or TV show.”
It was a tough decision for Druxman to leave LA behind and move his family to Seattle about 14 years ago.  “”We moved to Seattle to be closer to my wife’s family while our son was in his formative years,” he says.
Druxman admits that it was scary leaving LA.  “At first, I was didn’t tell anyone I had left LA,” he recalls.  “I was afraid that some producers wouldn’t consider using me because I wasn’t in LA anymore.”
Nonetheless, he felt confident that he was well-established in the industry and that – with movie and TV production largely moving out of what used to be described as “the movie capital,” -he would still be in demand.  His assumption turned out to be correct.
Seven years ago he and his family moved again – this time to Chicago – after working on the movie “Candyman.”
“Housing was far more affordable in Chicago as compared to Seattle,” he says.  “I had shot in Chicago four times before. I love Chicago. It’s a beautiful city.   And I love the people here. It’s like a giant Winnipeg.”
“I’ve been lucky to  have had a good career and met a lot of great people over the years,” Druxman says. 
Currently, Druxman notes, he is in between projects.  It is always a concern, he concedes – either feast or famine – especially since the industry is going through a lot of changes between the Covid lockdowns, multiple union strikes, the streaming services reducing their content, and more production going overseas.  But, he remains confident that something will turn up sooner or later.
 “This business is cyclical,” he observes.  “There is always a ying to the yang.”

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Local News

Young entrepreneur Jonah Shapiro balances business pursuits with university studies

By MYRON LOVE While most of us may not know what we wanted to do for a living when we “grew up,” Jonah Shapiro is an exception. The son of Sean and Kera Shapiro has been in business for himself since he was 14. Currently, he is balancing the responsibilities of running two businesses while taking commerce courses at Huron University in London, Ontario.
 The entrepreneur’s business career began six years ago while in Grade 9 at St. John’s-Ravenscourt – evolving out of  a business class he was taking  at the school.  “My project,” he recounts, “was marketing a golf shirt brand.  After six months, the business was so successful that I expanded my product line to include team and club apparel.”
His first customers, Shapiro recalls, were students in his class.  He then took over providing BBYO apparel.  (He served as BBYO treasurer for two years.)  He was soon providing apparel for local high school teams, businesses and specific events. 
“It was rather challenging at first getting my foot in the door, he concedes.  “Here I was, 14 years old, showing up and having had to have my father drive me to the appointments.”
 
Nonetheless, he made enough of an impression that he was soon receiving a lot of referrals.
Last September (in 2025), Shapiro began classes at Huron University with  Advanced Entry to the Ivey School of Business at Western University in London, Ontario.
At the same time, he officially incorporated “Student Merch”- and expanded his reach nationally.  The online Student Merch provides custom apparel and other merchandise for Canadian university groups.
Shapiro reports that he currently has contracts with student groups at Western, Queens, UBC, McMaster, McGill and York.  “There are more than 300 universities across Canada,” he says.  “We will soon have ambassadors at all of them.” 
This past summer, the enterprising young man started a second business venture in his home town.  “Benny’s Home Services” cleans windows.  Shapiro reports that Benny’s provided its services over the summer to 325 customers in and around Winnipeg.  This past summer, he says, the Benny’s team also provided its service to BB Camp – where Shapiro was a camper for many years as well as a counselor – free of charge.
He notes that the Winnipeg company has a crew of 14.  With Student Merch, Shapiro handles all the managerial work by himself.
 
This fall, the young entrepreneur received some prestigious recognition. He was one of 12 students to participate in the Morrissette Institute for Entrepreneurship’ s Founders Program, which recognizes Western’s top student entrepreneurs and community builders and pairs them with alumni mentors, along with an opportunity for leadership roles within the Morrissette Institute. The inclusion in the program comes with a  $20,000 scholarship.
The newest feather in Shapiro’s cap is his being invited to be a part of Tangerine Bank’s brand new Tangerine Business – a mobile-first digital banking platform for Canadian entrepreneurs and small businesses. Tangerine is Canada’s original digital bank.
“Tangerine asked entrepreneurs across Canada to help develop its new banking program,” he says. “I was invited to provide a young entrepreneur’s perspective.”
No doubt about it, to use an old phrase: “The world is currently Jonah Shapiro’s oyster,” and his potential would seem to be unlimited.  I am sure readers will be interested to follow his career achievements over the coming years.

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Local News

A local vocal extravaganza

Sara Schabas

By Dr. RAY SINGER I just experienced a revelatory weekend of superb vocal music, about which I wanted to share.
First, on attending Shaarey Zedek for Shabbat morning services I was pleasantly amazed at what was transpiring: Marlaina Sommer was beautifully singing her way through her own Bat Mitzvah service. Having married into a famous local musical family, I was not surprised also to hear her daughter and son-in-law, Sarah Sommer and Justin Odwak, sing – with their ethereal voices flowing over the congregants. Spouse and father Hillel provided percussion.
That was just for starters. My wife and I then attended the first concert in the Asper Jazz Series to hear the New York Voices in their Grand Finale concert tour, Winnipeg being the only Canadian stop on their tour.
Singing as a quartet for 38 years, their jazz singing was superb – with intricate harmonies, scat solos and amazing jazz vocals in the style of Lambert, Hendricks and Ross. They displayed exquisite control, and also interacted well with the audience.
Our final vocal musical experience was most revelatory and meaningful. This event was held on Sunday in the Laudamus theatre on the C.M. U. campus
It was organized by the Women’s Music Club of Winnipeg. Little did I know that club has been bringing in musicians of world stature for 130 years. If not for the kindness of our neighbours, Professors Harry and Mary Lynn Duckworth, we would not have known of this concert, entitled: “In a Dark Blue Night.” The title was written in both English and Yiddish in the program notes.
The music was performed by two wondrous musicians: Isabelle David, pianist and Sara Schabas, solo soprano. They performed a song cycle by the Pulitzer Prize-nominated, N.Y.C.-based Jewish composer Alex Weiser.
The first half of the concert consisted of Leiders by Viennese composers of the early to mid-20th century, all of whom were Jewish or in relationships with other Jewish composers. The composers included: Arnold Schoenberg, Alma Mahler, Erich Korngold, and others. Sara’s rendering of their songs and poems set to music was transcendent and emotive.
The narrator of theevent, Nolan Kehler, himself a musician and music radio host, was excellent in detailing the Zeitgeist around those Viennese composers and how they had to flee Vienna in the late ’30s. At least two were murdered in the Holocaust.
The second half of the concert was even more amazing. Alex Weiser composed music to accompany selected poems written by Jewish immigrants to New York early in the 20th century. Sara, having sung most of the songs in the first half in German, and one in English, then sang those poems beautifully – this time in Yiddish. Then, as a finale she sang a Gershwin medley. To add icing to this note-worthy cake, the pianist played the most challenging dramatic part of “Rhapsody in Blue,” knocking it out of the park
Thus, in one weekend I heard a Sarah and a Sara, and am grateful for our musical riches, especially brought to Winnipeg by both the Mennonite and Jewish communities. I am no music reviewer, but can appreciate the talent and artistry displayed by both Isabelle’s David and by Sara Schabas And, great news: Sara, who is from Montreal has landed a job teaching in the Desautels Faculty of Music. Hopefully many more of us will get a chance to hear her.

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