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
Chesed Shel Emes panel delves into different aspects of death and dying
By MYRON LOVE They say there are two things you can count on in life – death and taxes. I don’t know about taxes – but no one escapes death.
When we are younger, few give much thought to dying. As we age though, we come ever closer to that final reality. The best we can hope for – in my view – is to live to a relatively old age in relatively good health and pass away quickly – preferably in your sleep.
So what would one consider a “good death?” That was one of the questions that was discussed by a panel of three experts on the subject who appeared together on Sunday, November 24, in a program at the Chesed Shel Emes titled: “The Last Stop – Reflections on Living and Dying”.
(The Chesed Shel Emes is our community’s non-profit Jewish funeral chapel; the only one of its kind in North America).
About 180 people were in attendance – both in person and online, as independent Rabbi Matthew Leibl, palliative care specialist Dr. Bruce Martin, and Dr. Harvey Max Chochinov, a psychiatrist who is one of the world’s authorities on the subject of the emotional aspects surrounding death and dying, shared their experiences and perspectives. Alison Gilmur, popular culture and lifestyles reporter for the Free Press. served as the moderator.
A “good death” – as opposed to a “bad death” – is important for patients and families alike, Chochinov noted.
“Is dying in your sleep a good death?” Rabbi Leibl asked. “That depends on both the individual and the family. It certainly doesn’t give the individual much time to think about it beforehand. I think the major concern for most people is that death be as painless as possible.”
“The problem is that you only die once,” Chochinov pointed out. “There is no rehearsal. Many fear the unknown. And you don’t know what the path will be, what it will be like for you. Or if you will still be you afterward.”
Gilmour asked the panelists what people fear most about dying? Chochinov cited the case of one woman who refused to take her medication because she feared it would make her confused – the way it had her mother prior to her death. Reassuring her that she was in capable hands allowed her to accept proper pain management and die peacefully.
Another anecdote from Chochinov concerned the case of a young woman who was facing death – with a young family and a young child at hand. “She was concerned that her little girl would have no memory of her,” Chochinov noted. “We completed something called Dignity Therapy, which allowed her to create a written legacy that would eventually be shared with her child.”
Rabbi Leibl referred to a member of the Shaarey Zedek who had been suffering for some time. She chose to die at home but, before her passing, she asked her children to leave the room. She and the rabbi talked.
“I asked if she was afraid,” he recalled. “She said that she wasn’t afraid, but that she worried that she would never see her family again.”
Dr. Martin noted that every death is personal. “There is no common thread,’ he said. “A last conversation can be profound or trivial.
“One concern for the dying is not being able to live to see their grandchildren grow up and the shared moments they will miss.”
Chochinov also added that some people are worried about the process of dying and what it may be like. “While dying is inevitable, suffering ought not to be”.
Gilmour asked what people can do to help comfort someone who is dying?
Chochinov’s answer was simple: “Be sure to show up”. “When you know someone is dying,” he noted, “for many the impulse is to stay away, to withdraw. You don’t know what to say,” he observed. “Don’t try to fix what can’t be fixed. But do show up and listen.”
Martin recalled a former mentor who suggested that the most important question that someone who is visiting someone who is terminally ill is: ‘What can you do to help?’ “
“People who are dying don’t need to be reminded about it,” Rabbi Leibl observed. “Although every case is different, a visitor should talk to the afflicted individual the same way you would talk to anyone else. You can talk about life, for example, or what you are reading, or a show you are watching together.”
Gilmour concluded her questioning by bringing up the issue of government-approved Medical Assistance in Dying (MAID) – medically assisted suicide.
A number of liberal rabbis Are in favour of MAID, Rabbi Leibl noted. “Judaism however dictates that we must do everything we can to prevent death,” he pointed out.
“I have officiated at funerals for a few people who have chosen IAID,” he reported. “One such funeral was for a Holocaust survivor – in her 90s. I spoke with her the day before she died. She was at peace. I viewed what she was doing as courageous.”
Chochinov said it is also important to look at factors that can undermine a patient’s will to live, such as poorly controlled pain, limited access to palliative care and lack of supports, including respite.“MAID is driven by a desire for personal autonomy,” he observed. “It was originally designed as an option for patients who were suffering and facing a reasonably foreseeable death.” Eligibility criteria have been expanded, making patients not imminently dying, but suffering, able to request MAiD.He expressed grave concerns about extending MAiD for people who are mentally ill. “We simply can’t know which of these patients might improve with adequate time, support and care.”
In response to a later follow-up question from a member from the audience, Bruce Martin added that, in the case of people with dementia and MAID, the latter may prevent children and grandchildren from spending more time with the parent/ grandparent. After all, who then decides when the time is right?
The panelists were asked about talking about death and dying and how to cope. Martin noted that when he speaks to kids in schools, there is a lot of interest in the subject.
A question about planned giving elicited a comment from Chochinov about the importance of not only leaving a will, but letting family know what your wishes are. “It’s never too early to talk about these things”, he said, “but if you put it off long enough, there may come a time when it’s too late”.
Local News
Jewish scholar and bibliophile provides overview of hidden treasures hidden in Chevra Mishnayes congregation library
By MYRON LOVE Most shuls have a library of religious texts – or genizah (storage space) for discards – often books that were either donated specifically to the congregation or private collections dropped off at the synagogue after the original owners passed away.
On Sunday, December 8, the egalitarian Chvera Mishnayes synagogue in Garden City hosted a Lunch and Learning program, the highlight of which was an overview of the books housed at the Chevra Mishnayes – including Chumashim, machzorim, various assorted Talmudic tractates and commentaries on the Torah and Talmud. The program featured a presentation by Justin Jaron Lewis, during which the Yiddishist, bibliophile and professor of religion, revealed subtle features of some of the books, unveiling clues revealing when and where they were published, some direct connections to Winnipeg’s Jewish community and other interesting features.
The Chevra Mishnayes dates back to 1906. It has been at its present location on Jefferson Avenue since 1966. The former Ohel Jacob congregation merged with the Chevra Mishnayes in 1971.
“It’s amazing what people brought with them from the old country,” Lewis commented.
He cited as an example a book from the Chevra Mishnayes collection which was identified as having been bought from a Jewish books store in Toronto, but which had been printed in Poland. He pointed out other books that were published in the 19th century in cities such as Lublin, Vilna and Warsaw – all cities with large Jewish populations.
“The Warsaw edition had Cyrillic writing (based on the Russian-language alphabet) in it,” he noted. ‘Warsaw, Lublin and Vilna were all part of the Russian empire at the time.”
He added that a fourth book was published in Lviv in Ukraine which was part of the Austrian Empire in the 19th Century. “Because the Russians used to tax books that were printed in Russia but were to be taken out of the country, some claimed that their books were published in Austria or another country to avoid the tax,” Lewis explained.
Of interest also, for Jewish geography enthusiasts, Lewis noted, were books with the owners’ names written in them. One book belonged to the family of the well known comedian David Steinberg.
In a second book, Grade 9 Talmud Torah student Israel Pudavick had written his name.
There were other books originally from the collections of a shoichet named B.M Yahweis and one Rev. Martin Weisman.
There are religious commentaries in the Chevra Mishnayes collection penned over the years by Winnipeg rabbis such as Rabbi Y. H. Horowitz, Rabbi Meyer Schwartzman, Rabbi Shmuel Polonsky and one Rabbi Zorach Diskin – who lived in Winnipeg in the early 1900s.
“Some of the books offer a glimpse into Jewish history,” Lewis pointed out. There is one, published in 1865 in Warsaw, which he pointed out, includes a paean to Jewish life in Russia.
Censorship was strict in Russia, he explained. You had to satisfy the censors.
Lewis pointed out that trying to figure out the date of printing for some of the books can be challenging. In some cases, he noted, the book may be a copy – and the copyright date may be the date of the publication of the original. In other cases the date is written in Hebrew letters – leaving researchers to have to translate the letters to their numerical equivalent. What was thought to be the oldest book in the collection, for example, and which was originally estimated to date back to 1819, on further study was determined to be published in 1918.
Lewis also delved into the artwork in some of the books. With the Jewish injunction against recreating human images or those of angels or heavenly bodies, one book in the collection does have a scene where angels are watching as Moses hold the ten commandments and light is streaming from his head.
Another has a scene with Moses and Aaron opposite each other with lions overhead and Roman numerals also in the picture – an example, Lewis suggested of cross cultural influences.
Other popular scenes include the hands of the Cohen doing the priestly blessing The print design and layout can also offer opportunity for artistic flair.
Lewis further note that some of the machzorim have prayers inserrted in Yiddish – for instance, asking for good health – or a good life – or a prayer for one who is ill.
Incidentally, for readers with older Yiddish books at home who are considering trying to find a new home for them, Lewis is one of a handful of Winnipeggers who are collecting Yiddish books for transfer to the Yiddish Book centre in Amherst, Massachusetts.
The book centre,, he reports, is dedicated to finding good homes for such books in university libraries, or the homes of other scholars or other private homes. “A lot of younger people,” he said, “are rediscovering Yiddish and writing songs and poems in Yiddish.”
As to the Chevra Mishnayes’ library, Lewis observed that, as is the case with many other modern shuls, there has not been much interest in more recent years in studying Talmud and Torah.
“Some of the older books are crumbling,” he reported. “Perhaps we should form a committee to cull some of the books that we don’t need and look into ways to better preserve the remainder.
Readers with Yiddish books they no longer want can contact Justin lewis at justin_lewis@umaniotoba.ca
Local News
Representatives from The New Israel Fund of Canada come to Winnipeg to speak to Winnipeg audience
By BERNIE BELLAN In 1977, Menachem Begin became Prime Minister of Israel when his Likud Party was able to form a very narrow coalition with two other parties, thus ending 29 years of dominance by Israel’s Labor Party.
That event set in motion a series of changes to Israel’s political, social, and economic landscapes that are still reverberating to this day.
In reaction to the strongly conservative tilt of Begin’s government – which threatened to undo many of the democratic underpinnings of what Israel’s founders had attempted to achieve when Israel became a state in 1948, a group in California created what was known as the New Israel Fund. According to Wikipedia, “The New Israel Fund was established in 1979 in California and is credited with seed-funding ‘almost every significant cause-related progressive NGO in Israel’. Since its inception the fund has provided over US$250 million to more than 900 organizations. NIF states that while its position is that ‘Israel is and must be a Jewish and democratic state’ it says it was among the first organizations to see that civil, human and economic rights for Israeli Arabs is an issue crucial to the long-term survival of the state.’ “
In 1986, The New Israel Fund of Canada was established as a separate entity, with full charitable status in Canada. Since that time, “NIFC has contributed over $10 million to more than 100 organizations in Israel that fight for socio-economic equality, religious freedom, civil and human rights, shared society and anti-racism, Palestinian citizens, and democracy itself,” according to information taken from the NIFC website.
On Wednesday, December 11, two representatives of the New Israel Fund of Canada who were in Winnipeg spoke to a small group of individuals who braved a bitterly cold night to attend an information session held in the basement of Temple Shalom.
Those two individuals were: Michael Mitchell, a former Winnipegger and a longtime member of the board of NIFC; and Ben Murane, the executive director of NIFC. It was the first ever visit for Murane to Winnipeg and he said that one of the reasons he came here was to help make the work that NIFC has been doing in Israel more widely known to Winnipeggers.
Michael Mitchell introduced himself to the audience, saying that “the person who introduced me to the The New Israel Fund was (the late) Vivian Silver” (who, most readers are no doubt aware, was killed in the October 7 massacre).
Mitchell explained that the The New Israel Fund started “in the 1980s in a very small way, funding certain groups as the problems in Israeli society grew more severe.”
The New Israel Fund of Canada adheres very closely to the rules set out by the CRA for Canadian charities, he said. “We have agents in Israel supervising our projects.”
“NIF in Israel has an international board,” Mitchell noted, including Palestinians and representatives from NIF from other countries.
“NIF has money; they’re nimble, they’re quick,” Mitchell said, “to take nascent Israeli organizations and bring them along.”
NIF “has become much more sophisticated these past five years,” he suggested.
He cited as an example of how effective NIF has been in advancing the work of various Israeli peace groups the drastic decline in violence within Israel itself this past year between Jews and Palestinians, as opposed to what followed in the immediate aftermath of the October 7 massacre, when communities like Lod were riven by violent clashes between Israeli Jews and Arabs.
“If you’re in the middle of a war then you have to tamp down the violence between Jews and Palestinians,” Mitchell said. And a lot of the reasons for the decline in that kind of violence is attributable to the work done by organizations funded by NIF, he suggested.
Where NIF has achieved particular success, he continued, “is in organizing on the ground if you’re opposed to the messianic tendencies of the current Israeli government.”
“There’s a much bigger audience – both in Israel and abroad, that wants to see progressive goals achieved,” Mitchell argued.
As for where The New Israel Fund of Canada stands, Mitchell noted that “the Canadian Jewish community is going through what the American and British communities went through 15 years ago, which is to stop waiting for mainstream organizations to represent them.” A lot of new groups have been formed, he noted, such as “Women Wage Peace” and “Stand Together,” both of which helped to sponsor the December 11 event.
“Canadian Jews are not more conservative about Israel than American Jews,” Mitchell suggested, referring to the results of a survey of Canadian Jews for which NIFC was one of the sponsors. (For more on this turn to https://jewishpostandnews.ca/wjn/news-from-syria-shouldnt-distract-from-whats-been-going-on-in-gaza/.)
“There are at least 100,000 Canadian Jews who agree with us completely but are quiet because they don’t want to rock the boat.”
Ben Murane followed Mitchell, giving a lengthy presentation during which he fully outlined what the NIF is all about. He began by noting that “I am also making a pilgrimage to the place that made Vivian.”
Murane was just a youngster when Yitzhak Rabin was assassinated in 1995, he said. “A lot of the stuff I had heard about Israel – about how great it was, wasn’t quite true,” he noted.
Referring to the most recent Likud victory that returned Netyanyahu to the prime ministership in 2022, Murane said: “Let’s flash backward – a government got elected by a slim margin and announced a grand vision for rewriting Israel’s democracy. It was the first wave of what became a global populism.
“We (the NIF) started investing more in Israeli democracy projects.”
Two years ago, Murane reminded the audience, “hundreds of thousands of Israelis were on the streets” protesting what was then the Likud government’s attempt at judicial overhaul – which would have severely limited the power of Israel’s Supreme Court to intervene in cases where civil liberties were at stake.
“We (the NIF) were firmly there,” Murane said, helping Israeli civil liberties organizations to fight back at what the government was attempting to do.
Then, with the events set in motion by the October 7 massacre, Murane observed: “We knew what would happen. They (the Likud-led coalition) would use what happened as an excuse to advance the rest of their agenda.”
But, what happened after October 7 was the almost complete disappearance of many of the structures that held together Israeli civil society, Murane suggested.
Families were forced to evacuate from their homes near the Gaza Strip – with no support given by the government. Instead, groups that had sprung up in 2022 in response to the government’s attempted judicial overhaul stepped in to provide basic supports to those families, with food and housing. The NIF provided funding for many of those groups.
Something else soon became apparent after October 7, Murane said. “It was immediately obvious that the government didn’t care about the hostages…They weren’t their people.” (Many of the hostages came from kibbutzim that were strongly socialist in their orientation and not at all supportive of the right wing government coalition.)
In fact, Murane observed, within Israel’s current political atmosphere, the only opposition to the government is coming from “the organized support for the hostages.”
Something else Murane pointed out about the aftermath to October 7 is that “it wasn’t just Jews hurt on October 7.” There were members of other groups taken hostage, including Thai and Filipino workers, also Arab Bedouins.
The NIF has helped to provide support for evacuees ever since October 7, including to joint Jewish-Arab distribution centres that “have provided aid on a daily basis,” Murane noted.
“It is not Jew against Arab,” he said. “It is those who believe in life as opposed to those who believe in death…We will take care of each other. We will be the first to help civil society deliver aid.”
Murane suggested that there are several key components to what the NIF is attempting to do in Israel, including “pushback, partnership and peace.”
By “pushback,” he meant, pushing back at the narrative that the Netanyahu-led coalition has developed, which is that the hostages will not return until Hamas totally accedes to the demands put forward by the Israeli government.
“Freeing the hostages is a political matter,” he suggested. “The hostage families have been saying to Jews in the Diaspora: ‘If you want to support the hostages, then Bibi has to step down.’ “
As for “partnership,” Murane explained that “there are still many Jewish and Palestinian people who will stand together and find common cause.” He referred to groups such as “Omidm B’yachad” (standing together), whose members have been “protecting trucks bringing aid to Gaza” from Israelis who had been trying to stop those trucks from entering Gaza.
“We want to keep that flame of partnership alive,” Murane said.
He noted that on Yom Hazikaron (Remembrance Day in Israel) over “6,000 Jews and Arabs came together in one place to show compassion for one another.”
When it comes to “peace,” Murane pointed to the example of World Central Kitchen (an organization receiving funding from the NIF), which has been providing food to Palestinians in Gaza. Helping that group is “an act of morality showing people around the world Zionists giving support to their neighbours.”
Insofar as the road to peace is concerned, Murane suggested that “there are ways out of this mess.” He noted that the idea for the Abraham Accords, in which Israel signed peace agreements with Bahrain, the United Arab Emirates, Morocco, and Sudan, in 2020, was actually first advanced by an Israeli peace group known as “MITVIM.”
Murane posited that a “reinvigorated Palestinian Authority” is one component that would lead to advancing the peace process, but “of course the Israeli government doesn’t want to hear about that.”
The NIF has been active in supporting many different Israeli peace groups, Murane noted, including “Breaking the Silence,” which is made up of IDF veterans who want to draw attention to what Israel’s occupation of the West Bank is truly like.
“The way out of this mess is not going to come from the government,” Murane suggested. “It’s going to come from civil society.”
Yet, time is short, he said. There will be another election in Israel within the next year or two. “We have two to three years to see who will win the civil war in Israel: the annexationist camp or the pro-democracy camp,” he said.
To that end, the NIF has greatly increased funding for many Israeli human right groups, Murane noted. (In 2023, the NIF provided $19 million in funding to over 234 different organizations in Israel, of which $1 million came from The New Israel Fund of Canada.)
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