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

By MYRON LOVE Ariel Karabelnicoff left an indelible mark on our community over the 16 years that he and his wife Grabriela and their daughters lived here.  Originally from Argentina, Ariel and Gabriela came here – by way of Israel – in 2003.
On first arriving, Karabelnicoff worked for investment firm Jory Capital.  Subsequently, by turn, he served as the State of Israel Bonds’ point man here, then executive director of the local chapter of the Canadian Associates of Ben-Gurion University of the Negev – followed by filling the same role for the JNF here.  In 2019, he was lured to Toronto by former employer Israel Bonds to serve as national sales director.
About two years ago, Karabelnicoff left Israel Bonds for a new gig as executive director of Canadian Friends of Haifa University.
“I was excited to take on this new role,” Karabelnicoff says.  “I strongly believe in the importance of higher education.  Higher education broadens the mind and is a path to opening doors to multiple opportunities in life.  It is a key to social mobility.”
Karabelnicoff reports that, among the largest universities in Israel, the University of Haifa is the youngest.  Fully accredited in 1972, he notes, the university has an enrolment of 18,000 students – with a student body that reflects the diversity of Israel’s population.  About 40% of the students come from the Druze, Circassian and Arab communities and – among the Jewish students – there are many whose families are from Ethiopia.
The University of Haifa , he adds, also boasts the highest percentage – among Israeli universities – of students who are the first generation  in their families to attend university.
The university has several campuses. The original campus – a 30-floor structure – on Mount Carmel – houses several  faculties, among them the Faculty of Law – in its  new building  – and the Leon H. Charney School of Marine Sciences, which offers the only graduate program in Israel in that field. The Computer Science Faculty is located in the port area. The Faculty of Design and Architecture – formerly the Neri Bloomfield School of Design under Hadassah-WIZ Oauspices –  is situated in Haifa’s German Colony neighbourhood.
Coming soon for the University of Haifa,  Karabelnicoff reports, will be a new School of Medicine.   “There is a serious doctor shortage in Israel,” he points out.  “The plan is to work in cooperation with Carmel Hospital.  The University of Haifa is proud to lead in the efforts to train medical doctors and to be able to serve and take care of the population in the north of Israel.”
He adds that, as a result of the ongoing war, thousands of young Israelis that fought and are fighting right now, will be able to receive treatment and rehabilitation to their injuries and physical disabilities at the “Rehabilitation Training Center,” which will be built as part of  the new Medical School of the University of Haifa . The Center, he says, will be one of the most important facilities to be developed at the School of Medicine to train doctors in rehabilitation.
Karabelnicoff further reports that the new School of Medicine was inaugurated at an event during the recent Board of Governors meeting held on June 2, 2024.  The school will start teaching its first 50 students in October 2025. In subsequent years 150 students a year will begin training annually.
The school will be built on the grounds of the main campus of the University of Haifa on Mt. Carmel. The capital campaign that was recently launched totals US $120 million.  The university has already secured US$65 million – including US$50 million from the Amir Family, US$10 million more from the Bloom Family in Boston, and another US$5 million from other donors around the world so far. 
The Canadian Friends of Haifa University, he notes, has been in operation since 1973. The Canadian chapter has been, until now, largely focused on Toronto. The new executive director is working to expand the CFHU outreach to other Canadian Jewish communities.
“There are a lot of Israelis living in Winnipeg, for example,” he says. “I have begun reaching out to them.
“I would also like to see if we could negotiate some joint programming between Haifa University and the University of Manitoba.”
Karabelnicoff reports that the school year, which was delayed by the October 7 attacks and the current ongoing IDF operation in Gaza, began at the beginning of January.  “Things are slowly getting back to normal in Israel,” he says.  “We had about 1,500 students and faculty fighting in the reserves. Two-thirds are back in class.”
A current fundraising goal for the CFHU is to raise money for students  returning from the fighting to provide scholarships to help pay tuition and rent to make up what they had to sacrifice financially while serving in Gaza.
As an individual whose work history has been all about building relationships, Ariel Karabelnicoff may be just the man to expand CFHU’s footprint across Canada.
For readers interested in contacting Ariel about supporting Canadian Friends of Haifa University, his email address is ariel.karabelnicoff@haifa-univ.ca.

By MYRON LOVE Lawrence Pinsky K.C. , the Progressive Conservative candidate in the recent Tuxedo by-election to fill the seat held by former Premier Heather Stefanson, says that when he was first approached to let his name stand, he initially demurred.
“I said that I would try to find someone else,” he says.  “I approached five other potential candidates. All refused. Two cited concerns about anti-Semitism. So I said that I would run.”
But it is not only in politics that Pinsky has answered the call.  In fact, the partner in the law firm, Taylor McCaffrey, has been answering the call to help students at the University of Manitoba who felt targeted for supporting Israel. For several months now Pinsky has been providing his legal services pro bono to Jewish students fighting discrimination at the University of Manitoba since shortly after the Hamas attack on Israel on October 7. 
The son of the late Harry and Dvora Pinsky grew up in West Kildonan. He earned his LLB at the University of Manitoba and was called to the Bar in 1993.  He became a partner at Taylor McCaffrey in 1998.
Over the past 30 years Pinsky has built a solid career as a leader in the area of Family Law.  Among the high points of  his career have been his role as co-founder, director and president of FAMLI (the Family Arbitration and Mediation Legal Institute). He was also a co-founder and co-chair of the National Family Law Arbitration Program – and he served ten years as a member of the Manitoba Human Rights Commission adjudication panel.
As with almost everyone else in our Jewish community, Puisky was appalled by the horrors of the Hamas-led attack on southern Israel on October 7.    “My wife Jennifer and I attended the community-wide rally in support of Israel shortly after,” says Pinsky, whose father was a Holocaust survivor.  “What was happening on the streets of our cities was scary.  I felt that I had to act.”
His first action was to go to Israel in November with Jennifer – under the auspices of Sar-El – and volunteer at the Tel Hashomer army base in the Tel Aviv area.
Upon his return home, he began working with Jewish students facing both physical assaults and discrimination at the U. of M.
“Several students reached out to me,” he says.  “My colleagues and I began working with B’nai Brith and Hillel to try to help the students.  We met with several students and professors and others in the community.”
One fact he learned, he says, is that there are about 3,000 Israelis living in Winnipeg. (Consulting Editor Bernie Bellan comments: That assertion is simply not borne out by a reference to the results of the 2021 Census. According to the census, only 1350 individuals in Winnipeg gave “Israeli” as one of their ethnic origins in answer to the question: “What is your ethnic origin?” Furthermore, It was possible to give more than one answer to the question about ethnic origin on the census – and you were allowed to list up to six different ethnic origins, but if someone who had lived in Israel and was born in Russia or Ukraine or anywhere else for that matter didn’t give “Israeli” as one of their ethnic origins, the figure of 3,000 Israelis living in Winnipeg is simply not supported by any evidence.
The Jewish Federation of Winnipeg had long been embellishing the number of Jews living in Winnipeg – with spokespersons such as former Federation President Gustavo Zentner claiming a figures as high as 17,000 Jews in Winnipeg at times in the past. In fact, after a thorough analysis of the 2021 Census, I found that, at an absolute maximum, there were no more than 14,270 Jews living in Winnipeg in 2021. And, that figure took into account a combination of individuals who said they were “Jewish” – either by ethnic origin or by religion. For instance, of the 10,700 individuals who gave Jewish as one of their ethnic origins, a full 1,245 said they were “Christian” by religion.
One other fascinating finding from the 2021 census was that, of the 1350 individuals who gave “Israeli” as one of their ethnic origins, only 855 also said they were “Jewish” by religion! A full 385 of those individuals said they had no religion at all, while 105 said they were Christian by religion. Further, only 11,170 individuals in the census said they were “Jewish” by religion in Winnipeg. I’ve long argued that many people exaggerate the number of Jews, also the number of Israelis living in Winnipeg – without having any empirical evidence to support their claims. But, if it makes you feel better to say there are 17,000 Jews in Winnipeg and 3,000 Israelis, go ahead and trot out any figures you might like. Just don’t claim that those figure are supported by any evidence.)
Pinsky points out that discrimination against Zionist students and faculty by the University of Manitoba Student Union pre-dates October 7 by a number of years, but the situation has noticeably worsened over the past eight months.  Among the incidents he cites have been anti-Semitic posters being put up at the Asper School of Business, a Jewish student being spat upon, sexually harassing insults being hurled at a Jewish female student,  hostage posters being torn down, discriminatory differential standards at The Manitoban (the University of Manitoba Student Union newspaper)  being applied against Jewish Zionist students, the refusal or failure of the editor of The Manitoban to publish articles supporting Israel despite being  provided articles and requests to do so, and the suspension on February 28 by UMSU of Students Supporting Israel because of a comment made by Bassam Eid, a Palestinian Muslim human rights campaigner who spoke at the university under the auspices of SSI and others. 
Eid’s “offensive” statement (according to one Muslim student who made the complaint that got SSI suspended) was in response to a question from the audience. Eid said that “the major problem here, I call it the ideology of the Muslims. When it comes to ideology the Muslims are blind”.
 Notes Pinsky, who also helped SSI  get reinstated (on March 27), the SSI should never have been held responsible for Eid’s comment.  “The suspension was in violation of UMSU’s own guidelines,” he says.  “In addition, Mr. Eid made the comment in response to a question. The SSI organizers had no possible way of knowing or foreseeing Eid’s answer.”
The most recent disturbing situation on campus was sparked by an emergency session of the UMSU board  to consider a motion that would have approved a new definition of anti-Palestinian racism – as defined by the Canadian Arab Lawyers Association – which appears to contradict existing UMSU policy, and which would essentially ban any criticism or disagreement  of the official Palestinian narrative. Pinsky alleges that the student union proceeded in a manner that is contrary to existing UMSU bylaws.
“This is utter nonsense,” he states.  “It is an attempt to rewrite history and a violation of freedom of speech.  This is obscene.”
 On April 5, Pinsky and his colleagues filed on behalf of his clients – a group of Jewish students at the University of Manitoba –  a complaint with the Manitoba Human Rights Commission against the University of Manitoba Student Union (UMSU), the Manitoban, and other named individuals. 
Whereas Jewish Zionist students and faculty at other universities in Canada and the United States beleaguered by systemic anti-Semitism have gone  to court to seek redress,  Pinsky explains that the University of Manitoba students sought intervention by the Manitoban Human Rights Commission instead because the MHRC writ is broader in this province.
 “The recent actions of UMSU, The Manitoban and named respondents in regard to Jewish students and their supporters is unacceptable,” Pinsky states.  “They are a violation of the Human Rights Code, according to the complaint that was initiated.  UMSU, The Manitoban and the other named respondents would seem to have certain requirements that are applied only for Jewish Zionist students, restricting  them in a  way that would be unacceptable for any other groups . My clients are fighting to make sure that the UMSU, The Manitoban and the University generally becomes an environment where all students are treated equally and in a manner free of discrimination. Sadly, we have a long way to go.”
The vote on the UMSU motion was initially put off for two weeks to give both advocates and opponents more time to make their case and, shortly after the MHRC filing, was shelved indefinitely.
While he concedes that it could take several years before the MHRC  puts out its report and recommendations on the matter,  he is hopeful that he, his colleagues, and his clients will be able to work with UMSU, and the other respondents to find a positive way forward.
 “I remain optimistic,” he says.
He adds that this case is important not only for the Zionist students on campus.   In principle, any group could be similarly marginalized against,” he says. “I stand against all forms of discrimination.”
As to the situation at the many others campuses across Canada and  the U.S. being consumed by anti-Israel hate and anti-Semitism,  Pinsky comments that “The bottom line is that it is up to all universities administrations and student unions and all of their mechanisms and outlets to take the lead in acting strongly against hate before things escalate to the level that is roiling campuses such as Columbia, Harvard and McGill.
 ”To the extent that they fail to do so, governments should be enforcing or passing appropriate legislation to ensure a safe environment for all students without exception for hate targeted at Jewish students who happen to abide by the creed that the oldest still existent indigenous people of that land, have a right to the autonomy of a state there.”