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
Shaarey Zedek celebrates reopening September 29
By BERNIE BELLAN After a period of renovation that began in the spring of 2022, the Shaarey Zedek Synagogue was officially reopened on Sunday, September 29.
Here is a montage of photos from the “Chanukat Habayit” that took place on Sunday afternoon.
Local News
Yazidi Association of Canada honours Winnipeg friends who helped start Operation Ezra
By BERNIE BELLAN On Sunday, September 22, members of Winnipeg’s Yazidi community showed their appreciation to Winnipeggers who had helped Yazidis move to Canada and settle in Winnipeg since 2015 by inviting a number of Winnipeggers to a dinner at Temple Shalom. Many of the guests were individuals who had played vital roles in helping Yazidis escape persecution by ISIS in Iraq back in 2015.
It was in 2015 that a spokesperson for the Yazidi community at the time, Nafiya Nasso, came in contact with some members of the Jewish community who were touched by the plight of the Yazidis in Iraq. Through the facilitation of Jewish Child and Family Service the seeds for what was to become Operation Ezra were planted. Since then Operation Ezra has helped more than 50 Yazidi families immigrate to Canada and settle here. The strong bonds that were established back then helped what was then a very small Yazidi community grow into a much larger – and what is now a thriving community.
The Yazidi Association of Canada, under the direction of Nafiya Nasso, organized a sumptuous buffet dinner at Temple Shalom on September 22. Not only was the food delicious, at the end, attendees were handed empty containers and invited to go fill them up to take home whatever they wanted. (If someone from the Yazidi community ever wanted to open a restaurant, I bet it would do very well.)
Local News
Temporary Federal Government visa program paves way for Israelis looking to Canada for reprieve from war
By MYRON LOVE Shortly after the Oct. 7th Hamas attack, Immigration, Refugees, and Citizenship Canada (IRCC) instituted a temporary immigration measure for Israelis (as well as Palestinians from Gaza and the West Bank) to apply for a temporary reprieve in Canada through applications for work permits. According to Iael Besendorf, Jewish Child and Family Service’s Settlement Services Team Lead, since last October, 70 families have arrived from Israel, comprising 191 individuals.
“While some of these families were already in the process of applying to move to Winnipeg, the conflict in Israel hastened them to leave sooner,” she reports.
She adds that approximately 50 of the families – comprising over 150 adults and children – have come through under the aegis of the temporary work visa program.
Besendorf points out many of the individuals, couples, and families arrived in Winnipeg in great distress, only taking the few belongings they needed to settle here.
“Most left behind family, friends, and jobs in a sudden state of emergency,” she notes.
”During the first few weeks following their arrival, JCFS was there to hear and acknowledge their immediate trauma. We at JCFS continue to provide individual counselling and group supports as needed.”
She further adds that JCFS created – with the financial support of the Jewish Federation of Winnipeg – a special War Response Team to assess and respond to the needs of local community members and new arrivals.
“Mental health and counselling professionals on our team are available to meet with anyone needing services,” she says.
“As an adjunct of this, we at the JCFS Settlement Team are the first to interface with newcomers to our community and are also available to help triage and refer clients in need. These new arrivals receive our typical settlement supports such as: information and orientation about their first steps in Canada, which includes help with practical needs such as housing, daycare, schools for their children, employment resources, and an orientation to all the various Jewish organizations.”
The newly arrived Israelis have also been showing up at our community’s summer camps and Gray Academy of Jewish Education.
“After October 7, we welcomed 17 temporary students who came from Israel to be with friends or family in Winnipeg,” reports Lori Binder, Gray Academy’s Head of School and CEO of the Winnipeg Board of Jewish Education.
“Eight of those students remained at Gray Academy, and 12 more Israeli students have joined us for the 2024-2025 school year.”
She adds that enrolment at the school is over 500 (as compared to 472 last year) – with almost 100 of them brand new to the school. Quite a number of the new students, she points out, are from local families who see the value in a Jewish education.
Ian Baruch, Camp Massad’s Planning and Engagement Director, reports the camp at Sandy Hook welcomed “quite a few” IsraeIi kids this past summer among the 136 campers who were registered.
“About a quarter of our campers and half our staff are Israeli or from families from Russia who came here by way of Israel,” he notes.
The BB Camp office was closed through the first half of September so no comment was available as to the number of Israeli children at the Lake of the Woods camp.
Iael Besendorf further observes that among the challenges the Israeli newcomers are facing here is the length of time that it is taking the Federal Government to issue work permits.
“As a result,” she says, “the adults are unable to work, and many families are feeling this financial pressure.”
She adds that “as the situation in Israel appears to be far from over, we expect more people will seek reprieve outside of Israel. The Federal Government just announced an extension of one more year, to March, 2025, for this temporary visa program. As such, JCFS expects that more will arrive and that we will are likely to see a steady stream of more people over that time.”
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