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
Richard Morantz and Sheree Walder contribute $1 million to ongoing Shaarey Zedek Synagogue Capital Campaign
By MYRON LOVE “We really welcome the decision of Richard Morantz and Sheree Walder to donate $1-million to our ongoing capital campaign,” said Rena Secter Elbaze, the Shaarey Zedek Synagogue’s executive director, on October 9. “They and their families have a long history of supporting our community organizations and the State of Israel. Their contribution to the Shaarey Zedek is inspirational.”
The husband and wife team officially presented the cheque to Elbaze at a brief ceremony at the synagogue the morning of October 9, in the newly renamed Richard Morantz and Sheree Walder Auditorium.
In their remarks, both Morantz, the president and CEO of Globe Property Management, and Walder, a lawyer who is a former partner in the law firm Myers LLP, spoke of their long family connection to the Shaarey Zedek. “My mother’s family were Jewish pioneers in Winnipeg,” Walder noted. “My great-grandfather, Samuel Cohen, for whom I am named, was an original member of Shaarey Zedek Synagogue. I started coming here with my own grandfather, Sidney Cohen, when I was about two years old. I remember exactly which pew we sat in and how my grandfather helped me to follow along in the siddur during services. Shaarey Zedek has always been a place of great comfort for me.”
Morantz added that his own bar mitzvah took place at Shaarey Zedek Synagogue on April 29, 1972. “I learned my maftir from the legendary Rabbi Berkal,” he recalled. “We continued to celebrate here with our own children’s bar and bat mitzvahs. I am very grateful that we got to watch our own children shine on the bimah.”
It was the Hamas-led assault on Israel and subsequent tsunami of antisemitism worldwide that prompted the couple to consider stepping up and contributing to the Shaaray Zedek campaign in such a magnanimous way.
“I have never been a religious person,” Morantz remarked. “While I may be more secular, I strongly believe in the traditions of Judaism. I had a charmed upbringing in the 60s and 70s in River Heights. It is not the case that I experienced no antisemitism, but those experiences were very minimal. Post-October 7th, I found myself, for the first time in my life, having to judge every situation and every person I came across before divulging the fact that I am Jewish or discussing Israel. I came to the realization, during the process of considering this donation, that a primary driver for us is that this synagogue is a safe place for Jews, where we can comfortably be ourselves.”
Walder pointed out that while her mother’s large family were Jewish pioneers, her father was a Romanian Holocaust survivor, with almost no family after the war. “Family matters a great deal to us,” she said. “In addition to strongly agreeing with Richard that the tragedy of October 7th and continuing and growing anti Semitism are big drivers for us in making this donation, we also want to see Shaarey Zedek be a safe and special part of the lives of our now adult children and the generations that will follow them. It is very fulfilling to us that we are contributing to making that happen.”
Walder further credits the encouragement of her old friend and law school classmate, Neil Duboff, for helping to clinch the decision for her and her husband to make the donation. “Neil has worked so hard for the synagogue and our community for so many years and we applaud his efforts and commitment,” she noted.
(Duboff is a past president of the Shaarey Zedek and chaired the capital campaign.)
Walder also mentioned the support of Gail Asper in making the decision. “I met Gail on our first day of law school in 1981,” she recalled, “and we have been very close ever since. While we can all agree that Gail certainly knows how to talk, she also really knows how to listen. Through all of our discussions with her about making this donation, she listened hard, she came up with solid answers, and she was instrumental in leading us to the decision to donate. Shaarey Zedek is extremely lucky to have such a talented fundraiser.”
“We have to make special mention of Rena Secter Elbaze,” Morantz noted. “Rena literally blew me away when I met her for a tour of the synagogue. Her passion and knowledge are remarkable. We believe that our synagogue is in great hands and we feel much comfort and confidence making this donation.
“We are very proud of the recent renovations and upgrades to the synagogue,” he added. “This place is absolutely beautiful. We also feel privileged to have met with Rabbi Carnie Rose. We know he will be a great asset to the synagogue and all of its members for a long time to come.
“We are so honoured to be here with you today and to feel that we are making a difference to this special place”.
He concluded his remarks with an observation by Elie Wiesel that “a synagogue is a house of memory as well as a house of prayer. It reminds us of who we are and where we come from.”
Local News
Winnipegger Charlotte Kittner traces ancestry back to the Jewish expulsion from Spain
By MYRON LOVE Ladino was long the spoken language of the Jews from the Iberian peninsula and North Africa just as Yiddish was the day to day language of the Jews of Eastern Europe. Charlotte Kittner is most likely the only Winnipegger – and one of the few left in the world – who still speaks Ladino.
But Ladino is just one of eight languages that Kittner, who turned 100 in August, can speak – the others being Bulgarian, Romanian, Czech, Spanish, French, Hebrew, Turkish and English.
Charlette (Sarlota) Kittner was born in Bulgaria – in a Jewish community whose members were largely descended from the Jews who were forced out of Spain in 1492 (and Portugal a few years later) by the Spanish expulsion.
A few days after her birth, that part of Bulgaria became part of Romania. She was so small at birth, she recounts, that the doctor had little hope she would survive more than a few years. She slept in a drawer of a chiffonier lined with many layers of cotton for the first year.
The youngest of three sisters, she recalls growing up comfortably in a warm and observant community. Her father, Avram, who operated a textile factor, attended synagogue on Shabbat and all the Yom Tovim.
The family – along with all the other Jewish families in Romania, fell on hard times with the advent of World War II. Although Romania was an ally of Nazi Germany and was never occupied, members of the Romanian Iron Guard – the local equivalent of the Nazis – could be just as sadistic and murderous as their German counterparts. Although most Romanian Jews outside of Bucharest were murdered, those living in the capital city, while facing much discrimination and many restrictions – were spared internment and deportation.
Kittner notes that mother, Minduch, died in 1945 and she lost her father in 1946.
During the war Charlotte and her sister, Lisa, were assigned to a factory making linens and garments for the Nazis.
She recalls that life was tough after liberation and continued to be difficult after the coming of Communism in immediate post-war Romania.
After the war, Kittner trained as an accountant and found work with a large manufacturer. That is where she met her husband, Mike (Misu) Kittner. They were married in Bucharest in November,1952.
Kittner’s sisters, Suzanna and Lisa, both made aliyah after the war. Charlotte and Mike followed in 1964. They lived in Israel for three years. Charlotte quickly learned Hebrew and found work as an accountant.
But life in Israel was difficult economically in those days. Mike’s brothers, Fred and Serge, had previously settled in Winnipeg and encouraged Mike and Charlotte to join them. They did – in May 1967.
The next year, Chralotte’s sister Lisa and husband, Nick, also moved to Winnipeg.
Their other sister, Suzanna, and her husband, Selu, a well known painter, remained in Israel.
Over the years, Kittner has visited Israel – where she has numerous nephews, nieces and cousins – as well as having taken trips back to Romania and to other European countries.
Once in Winnipeg, she and Mike quickly found work in the garment industry. She was first hired as a bookkeeper by Stall and Son. After a short time she moved over to Silpit Industries, where she served as chief accountant for many years. Kittner has favourable memories of her boss, the late community leader Harry Silverberg. She later worked for another Silverberg firm, Brown and Rutherford, a lumber processing operation.
Mike only worked in the garment industry for a short time. He found his niche in insurance sales – where he excelled. He also founded Broadway Agencies and became a booking agent for budding new performing artists in Europe whom he brought to Winnipeg to appear in popular local night clubs.
Mike and Charlotte’s nephew, Brad Kittner, recalls as a youngster going with his
parents, aunts and uncles to those clubs and watching what he describes as “these fabulous singers.” He says that they inspired him to pursue his own successful career as a karaoke singer and performer for hire.
Charlotte and Mike first lived in East Kildonan for a year, then moved to Partridge Avenue in West Kildonan. A few years later, they bought a new house on Drimes Place, north of Templeton, in northwest Winnipeg.
While Mike Kittner passed away in 1991, Charlotte continued to work into her 70s.
Through the years, she has led a busy social life with family and friends. As Brad Kittner notes, even at 100, “Aunt Charlotte continues hosting friends and family for full course meals and gatherings at her place.”
Charlotte celebrated her hundredth birthday with more than 20 relatives and friends at the Ichiban Restaurant.
Although hard of hearing and somewhat frail of body, her mind remains relatively clear. She still enjoys reading fiction, doing crosswords and looking forward to her weekly card games with her sister-in-law, Sylvia, who also lives at Chateau West on Jefferson, and other friends.
May she live to 120!
Local News
Over 2000 supporters turned out for walk for Israel despite overcast skies, rain
By MYRON LOVE October 5 started out overcast and rainy. The rain – which fortunately stopped just before the Walk for Israel began – didn’t prevent over 2,000 supporters of Israel – both members of our Jewish community and those from outside of our community from turning out for the second annual Walk for Israel commemorating the horrific events of October 7 – two years ago – the darkest day in post-Holocaust Jewish history
As with last year, the 45-minute walk began and ended at the Asper Campus. While last year the walk was followed by speeches from community leaders and various politicians, this year the only speaker was Paula Parks, President of the Jewish Federation of Winnipeg, who pointed out that the ongoing anti-Israel and antisemitic demonstrations- post October 7- have strengthened the bonds within our community and spurred more people to affiliate with our communal organizations. She further noted that more of us are speaking out and we need to continue to do that.
“The number of people who participated was inspirational,” says Gustavo Zentner, the representative for Manitoba and Saskatchewan for the Centre for Israel and Jewish Affairs. “We had numerous allies as well as members of our Jewish community. We had people from all walks of life.”
“We had a fantastic turnout,” added Jeff Lieberman, the Jewish Federation of Winnipeg’s CEO. “Paula spoke very well. Her comments were meaningful.”
He expressed his hope that the hostages would be released very soon, the war would be ended, and Israelis can finally live in peace.
The commemoration’s focus this year was primarily on visual images rather than words. The walk featured a number of photos taken by local members of the Winnipeg Jewish community who visited the Nova site in person or attended the Nova exhibit that travelled to various parts of Canada and the United States. The photos were displayed for the day along the fence on Doncaster Avenue – the first stage of the walk. Participants were handed Israeli flags and kalaniot (red anemones) flowers, the official flower of Israel, and were encouraged to place them around the photos on the fence.
As well, as part of the October 7 commemoration, 33 paintings depicting some of those taken hostage on October 7 were put on display along Main Street of the Campus from the week of October 3-October 10. The paintings were the work of well-known Israeli illustrator, cartoonist, humourist, performance artist and political activist, Zeev Engelmayer.
The walk on October 5 concluded with Israeli shimshinim – Israeli youth representatives here in Winnipeg from Israel – and other young people from our community reciting a prayer for the hostages (who were finally freed last week), and members of the IDF, followed by the singing of “O Canada” and “Hatikvah.”