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
Third annual JFest Winnipeg will be offering programs for all ages
By MYRON LOVE JFest Winnipeg is back with a good variety of musical performances, a book launch, popular Jewish-themed films, children’s activities, and a family-oriented Shabbat dinner.
“JFest,” observes Laura Marjovsky, the Rady JCC Director of Programming, “is an opportunity for our community to experience Jewish art and culture. With our range of JFest events, we are trying to reach out beyond what has been our base audience and appeal to all ages. We have a commitment to bring top notch Israeli performers to share the highest caliber of Israeli entertainment with our audiences.”
The week-long festival (November 14-21) kicks off with a performance by top-ranked Israeli singer-songwriter Harel Skaat. The popular Israeli star began singing as a child. He shot to fame when he finished second in the second season of “Kochav Nolad” – Israel’s version of “American Idol.” His first album was released in 2006 and achieved Platinum status – with one of the songs being ranked as “song of the year.” He followed that up in 2009 with a second album that reached Gold status. In 2010, he represented Israel at the Eurovision competition.
Skaat’s performance is scheduled for the Seven Oaks Performing Arts Centre (which is attached to Garden City Collegiate) beginning at 8:00 P.M. on Saturday, November 14. Patrons will have the opportunity to purchase an enhanced ticket to attend a meet and greet with Harel.
All other JFest programs and activities will be at the Rady JCC.
Music Producer Karla Berbrayer says Ben Caplan’s performance on Saturday, November 21 will also be another highlight. “Ben Caplan redefines what it means to be a modern folk artist,” Berbrayer says. “His music and stories are matched by his larger-than-life stage presence. This concert focuses on how his Jewish upbringing has influenced his entire performance career.”
“Flatland Famous” is returning by popular demand. This quintet, known for its performances at Winnipeg Jets games, will be presenting its concert, “Jewish Soul of Rock and Roll,” on Wednesday, November 18, at 7:30 pm. This year’s show will feature songs by Amy Winehouse, Neil Diamond, Barbra Streisand, Simon and Garfinkel, and other famous Jewish icons.
On Tuesday, November 17, local author Deborah Schnitzer will be taking centre stage with the launch of her new book, “The Woman Who Swallowed West Hawk Lake.” The University of Winnipeg English Professor Emeritus’s new novel explores intergenerational trauma related to Nazi breeding programs. Joining Schnitzer on stage will be a panel of professionals who have experience working with children who have experienced trauma.
And of course, “Best of the Fest” is back. Films to be presented will include“The Floaters” and “We Met at Grossingers,” two wildly popular movies at last spring’s Winnipeg International Jewish Film Festival.
“The Floaters,” to be screened on Monday , November 16 at 7:00 pm is a funny and bang-on depiction of Jewish summer camp culture.
“We Met at Grossingers” is a loving look back at the Borscht Belt in New York’s Catskills, where generations of young Jewish performers earned their dues and developed their acts. The film will be screened on Thursday, November 19 at 7:00 P.M.
On Friday November 20, JFest will host a Family Shabbat dinner featuring Anat Kriger, an Israeli-born, Toronto-based musician, actor, and children’s performer, who has made several appearances in Winnipeg at major communal events.
Kidfest on Sunday, November 15, will be a day-long potpourri of programming that will include live performances, workshops, bouncy castles, games and crafts, and much more.
Readers seeking more information about JFest can contact Laura Marjovsky at 204 477-7539 or lmarjovsky@radyjcc/com
Local News
Hen Mazzig, leading Israeli advocate, makes first Winnipeg appearance
By MYRON LOVE On Tuesday, October 6, a large number of members of our community packed the chapel at the Shaarey Zedek Synagogue, eager to welcome Hen Mazzig in his first appearance in our community.
Over the past few years, the Israeli-born Mazzig – who was appearing at the invitation of our Jewish Federation and Combined Jewish Appeal team – has become one of Israel’s and the Jewish people’s leading advocates on the international stage. His online platforms reach as many 100 million viewers a month with a regular following of almost 1 million. He has been interviewed by numerous leading media outlets and has given addresses at close to 500 universities in recent years.
Mazzig’s presentation in Winnipeg (which was funded by the Asper Family and the Asper Foundation) took the form of a question and answer format with Sarah Mali, the Director General of JFC-UIA (Jewish Federations-United Jewish Appeal) Canada in Israel, asking the questions.
Mali , who was visiting Winnipeg for the third time in the past three years, began by expressing how honoured she felt about having the opportunity to converse with Mazzig – referring to Jewish Federation of Winnipeg President Carrie Shenkarow’s comments regarding Mazzig’s “devotion to Israel and the Jewish people”, his “deep sense of purpose, moral clarity” and “willingness to enter some of the most difficult spaces and conversations.”
The first question that Mali posed to Mazzig was related to his visit to the Canadian Museum of Human Rights and its controversial and one-sided take on the longstanding and ongoing Israeli-Palestinian conflict. She referred to a comment that Mazzig had made on X the day after visiting the museum, in which he wrote that while he “has no problem with people learning about Palestinian history,” he wished that “Palestine Uprooted” didn’t “distort the regional events, including the displacement of 800,000 people just like my grandmother, Hela, who became a refugee when Iraq turned on its Jewish community” post-1948.
“History can only lead to reconciliation when it is told honestly,” he observed. “Otherwise, it is just fuelilng an agenda.”
What most disturbed him about the exhibit, Mazzig told his audience, is that it erased his own family’s history. Expanding upon his family’s roots, he noted that his father’s family came to Israel from Tunisia and his mother’s side from Iraq. He spoke in particular about his maternal grandmother, Hela, who left behind “a beautiful civilization” – Jews had been living and thriving in Iraq since before the Roman destruction of Jerusalem 2000 years ago – to a new land (Israel), where she had to learn a new language (Hebrew) and rebuild her life.
Mazzig added that his grandmother is his anchor in life and the inspiration for all that he has accomplished.
Mali asked Mazzig about his ability to empathize with Palestinians. It was difficult to do, he answered. He got to know Palestinians, he recalled, during the Covid epidemic when he was serving as a medic with the Israel Defense Force and found himself responsible for helping Palestinians through that difficult time and transporting sick Palestinians to Israeli hospitals.
“Even though I fight so hard for Israel,” he observed, it doesn’t mean that I can’t feel empathy for anyone else.”
Mali asked Mazzig how October 7, 2023, changed him.
“I chose not to become a victim,” he said, “but rather to engage more with the world, bear witness, share our stories and talk about genocide. While I was actively advocating for Israel before October 7, I have been much more in demand since. I have become a lot more visible.
”I have found that a lot of people support us,” he continued. “They see what is happening and are on our side.”
On the other hand, he added, a lot of people don’t know anything about Israel. “It is a matter of education,” he said. “I encourage people to go to Israel and talk to Israelis.”
Mali’s last question was what Mazzig means when he writes that “I promise to love being Jewish ten times more than anyone hates me for it.” What does it mean to him to love and find joy and happiness in being Jewish”, she added?
It means cherishing our rich history, Mazzig responded, enjoying Shabbat dinners with family and friends, celebrating all of our holidays and traditions.
“The Jewish People have been through so much over the past 2000 years,” he said. “Many people have tried to destroy us, but we have survived. We are arisen from the ashes numerous time and continued to move forward. Not only are we still here but we have returned as an independent people living again in our ancestral homeland.”
Also addressing the audience at the Shaarey Zedek was Steven Shulman, the president and CEO of the Jewish Federations of Canada. Shulman heaped much praise on our Jewish community in Winnipeg.
“Winnipeg is special,” he noted, “not just in Canada but worldwide. Your CJA campaign continues to be the most successful in North America. You have an outstanding CEO (of the Jewish Federation of Winnipeg) in Jeff Lieberman, who is universally respected.”
He further praised Gray Academy and our community’s highly successful GrowWinnipeg campaign – which has attracted thousands of new families to our community over the past 25 years.
He noted that he was particularly impressed with how our community has come together to protest the biased Nakba exhibit at the Canadian Museum for Human Rights.
He also spoke of the many supporters that we have among non-Jewish Canadians – singling out, as an example, the police officer in Belleville who put his own life on the line protecting the city’s only Jewish congregation from a terrorist attack during yom tov services.
The last word went to Jeff Lieberman, who thanked all the members of our community who have contributed to the CJA campaign this year, as well as our many non-Jewish friends who continue to stand with Israel and the Jewish community.
Local News
Enrolment in videographer/photographer Jeff Gordon’s education programs growing exponentially
By MYRON LOVE When last I spoke with local videographer/photographer Jeff Gordon early last year, he had just launched his new training program for budding photographers and videographers. Now, about 20 months later, he is happy to report that his new course has grown well beyond his original expectations.
“My program has already graduated more than 100 students – with another four sessions beginning in September,” says the founder of JAG Videos and Photography. “I have recently introduced a new training program geared to organizations and businesses and have digitized my courses so that they can be accessed from anywhere in the world.”
What is unique about what Gordon is doing in that this is the only educational program that combines photography and video. “Up until now, the only options for anyone interested in learning the art of photography or making videos has been either Red River College or the University of Winnipeg,” Gordon pointed out in that earlier Post interview. “I recognized a niche here and my goal is to fill this gap.”
He launched his educational initiative in mid-January in his new studio behind his north River Heights home with three classes a week – one strictly for teenagers – over 16 weeks.
“The response exceeded my expectations,” he said in that earlier interview. “We sold out quickly and I have a waiting list. I am teaching the students everything I know about photographer and videography. The curriculum is easy to follow.”
Gordon’s interest in photography and videography – and teaching, he recalled, came about through his previous career as a musician. The graduate of the Hebrew Bilingual program at Brock Corydon Elementary School, and later, Shaftesbury High School – began playing drums in high school.
After high school, he enrolled at the Los Angeles Music Academy. In 2006, he graduated from the jazz program at Grant MacEwan University in Edmonton. His professional credits include 16 years as a drummer with the Sarah Sommer Chai Folk Ensemble, and five years as a member of a touring band called “Driver.”
It was while performing with “Driver” that he began doing videography. “I have always been fascinated by technology,” Gordon said. “While on tour, I began making videos of our live concerts. I would set up four or five cameras to record the shows.”
In 2014, Gordon took the plunge and dove into photography and videography full time with the founding of JAG Videos and Photography. He started with weddings and gradually started to develop a commercial and corporate clientele. He reported that he does a lot of head shots for businesses. He has also done a number of TV spots for Global and Corus.
Gordon’s curriculum is his own creation, based on his experience and a previous training manual he wrote years ago for an entirely different group of students: drummers.
“I used to have as many as 40 students at a time,” he recalled. “I really enjoy teaching. I love expounding on subjects I am passionate about.”
Gordon’s first foray into teaching had a focus on helping businesses and organizations, government departments and agencies enhance their online presence.
“Increasingly, we are in a digital world,” he points out. “Businesses need staff who are adept at making videos and taking photographs. Companies need staff who are able to create videos for them to promote the business online. I can customize my training programs to the needs of my clients to create their own social media and marketing materials.”
Gordon notes that this outreach wasn’t initially part of his expansion plans. “I had people coming to me for this training because there is no one else providing this kind of education,” he observes.
Gordon’s major new development this fall is that he has built and launched a full digital version of his course – which he calls The JAG Creator Academy. “Going digital has opened the training up beyond Winnipeg and makes it available to people globally,” he points out.
“I developed a website, filmed all my tutorials and recorded the video,” he says.
“I even have a sponsor for it,” he adds. (That would be Evoto – an AI-powered photo editing software built specifically for professional photographers.)
The program is only available in English but, Gordon reports, there has been a lot of interest so far.
The next stage in the evolution and growth of Gordon’s move into education will be a program which will coach businesses on SEO (Search Engine Optimization) – and which will involve helping businesses access Google and get their name at the top of search results.
“SEO is what has helped my business stay at the top of Google (searches) and in demand all these years,” Gordon notes. “I am running ads for my new SEO programming on Facebook and Instagram. I am anticipating that I will draw clients from across Canada and the United States.”
While he is still in demand locally as a photographer and videographer, he notes, the education side has also become a full-blown business of its own and, he reports, he is looking to hire additional staff.
As well, he is continually adding new topics and courses to his offerings.
Readers who may be interested in contacting Jeff can find him through his website, which is www.jagvideos.com.
