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Winnipegger Mark Joseph leading efforts to fund treatment for rare genetic disorder that afflicted his daughter

The Jospeh family (clockwise from top left): Mark, Jennifer, Edison, Darwin

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

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Young pediatrician Daniel Kroft and his Jewish history podcast

By MYRON L0VE It has been said that if you want to make sure to get something done, give the task to the busiest person in the room. That adage would certainly apply to Daniel Kroft.
Although only 30 years old, Daniel, the son of community leaders Jonathan and Dr. Cara Kroft, has emulated both of his parents by being a community leader as well as a pediatrician. In the former category, Daniel  is a member of the Jewish Federation of Winnipeg’s Community Planning Committee  (His father, Jonathan, is a Past President of the Federation). 
The younger Kroft is also a co-founder of the Manitoba Maccabim – a young Jewish advocacy group. He recently joined Belle Jarniewski, executive director of the Jewish Heritage Centre of Western Manitoba, in a presentation to the Internal Medicine Department of Health Sciences Center on the subject of antisemitism.
Professionally, the Gray Academy graduate (class of 2012) is a member of a clinic run out of St. Boniface Hospital, is on staff at the Children’s Hospital, puts in time at the Health Sciences Centre, and serves as a consultant pediatrician at Brandon’s regional hospital.  He also takes trips to northern Manitoba to offer his services.
In addition, he is a member of the Jewish Physicians Association of Manitoba.
With all that on his plate, you wouldn’t think that Kroft would have time for much else.  If so, you would be wrong. Four years ago, he launched a new initiative, a podcast – “The Jewish Story” – intended to teach interested listeners about Jewish history.
The idea came to him, he says, back in 2021, when he was still a medical student.  “It was the time when Black Lives Matter was in the news,” he recalls.  “At med school, we were learning all about Black history and Indigenous history.  I realized that I actually didn’t know much about my own Jewish history.”
The first source he turned to was the Anglo-Jewish historian Simon Schama and his book, “The Story of the Jews”. He followed up with online courses from Oxford and Harvard as well as a lecture series led by prominent historian Henry Abramson.
Setting up a podcast, he notes, required another learning curve. “It takes me about a year to do the research and organize my podcasts,” he reports.  “I had to learn how to do a podcast and about which equipment to buy.  I set up a recording studio in a room in my house.” 
On his website (rss.com/podcasts/thejewishstory/), Kroft describes “The Jewish Story” as “a Jewish history podcast for the 21st century”.  “We use the latest in archaeology, linguistics and historical methods to sculpt the history of the Jewish People from the exodus from Egypt until the present,” he notes.
He started his series of podcasts going back to the beginning – from the earliest evidence of Jewish existence through the establishment of the Jewish kingdom, its conflicts with neighbouring empires, to its destruction by the Babylonians.
And that is just the first episode.
The first season – seven episodes – encompassed Jewish history up to and including the Roman invasion of Jerusalem and destruction of the second Temple in 70 CE. Kroft points out that some of his podcasts feature guest commentators.  In his first season, for example, in the third episode, he interviews Rabbi Matthew Leibl about the relevance to modern Jewish life of the first eight centuries of Jewish history.
In the seventh episode, he discusses with his former elementary school teacher, Sherry Wolfe Elazar ,what lessons modern Jews can learn from the Greco-Roman period for Jewish history.
The second series of podcasts focuses on the development of Jewish life in the first centuries after the Diaspora and the effects of the new Christian and Muslim religions on the Jewish people.  The seventh and last episode of season two features Rabbi Anibal Mass, the spiritual leader of the Shaarey Zedek Synagogue, talking about a wide range of subjects ,including the breakaway Karaites, he definition of Jewish music, and how technology has shaped modern Jewish practice.
The third season covers the 11th-15th centuries while the most recent series of episodes spans the period from 1500 to 1650.  Kroft reports that the next group of podcasts will provide an overview of Jewish life in the 17th and early 18th centuries, including the beginnings of Jewish life in North America.
I asked Kroft when he finds the time to work on his podcasts.  His response: in his spare time – weekends and holidays.
The podcaster reports that when he started, he was getting 30-40 listeners per episode. Now his numbers are up to 200-300 from all over the world.
For readers who may want to hear Daniel Kroft’s story in person, he will be one of the presenters at the upcoming Limmud Winnipeg.  Kroft will be presenting on Sunday, March 23, at 1:30 at the Campus.
 
For more information aboutLimmud,  contact coordinator@limmudwinnipeg.org or 204-557-6260

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Former Winnipegger Ezra Glinter to discuss his new biography of Rabbi Schneerson at upcoming Limmud Winnipeg

By MYRON LOVE The Chabad-Lubavitch movement is one of the world’s largest and best-known Hasidic groups. Driven by the belief that we are on the verge of the messianic age. Lubavitch, under the leadership of the charismatic Rabbi Menachem Mendel Schneerson , has, over the past 70 years.  engaged in an outreach program to the Jewish world which may bemunprecedented in Jewish history.  Wherever there is a Jewish community in the world, no matter how small, you will find a Lubavitcher Rebbe.
I have seen one survey that more younger American Jews – almost 40% -have developed a connection with Chabad than another branch of Judaism.
Last October, former Winnipegger Ezra Glinter published “Becoming the Messiah: The Life and Times of Menachem Mendel Schneerson,” the first biography of Rabbi Schneerson to combine a nonpartisan view of his life, work, and impact with an insider’s understanding of the ideology that drove him and that continues to inspire the Chabad-Lubavitch movement today.
On Sunday, March 23, Glinter will be introducing his biography to his home town as one of the presenters at the 15th Limmud Winnipeg Festival of Jewish Learning.
(Limmud was founded in England in 1980 with the aim to build bridges between professional and nonprofessional educators and between those of differing religious commitments. Today, the Limmud Festival is held in more than 90 Jewish communities in over 40 countries around the world.)
The New York-based son of Nancy and Harry Glinter has had an interesting life journey of his own – a journey that has included his own immersion for several years in the Orthodox world – making him an ideal individual to explore the Rebbe’s life and  work and impact on Judaism.
“It was helpful hat I could apply the skills that I learned in Yeshiva to the research,” Glinter notes. 
The fact that he is also self-taught in Yiddish was also helpful.

Glinter in a graduate of Talmud Torah.  At the age of  16, Glinter chose to pursue a more religious lifestyle.  With his parents’ support, he enrolled in Ner Yisroel in Batimore.
In 2004, after four years in yeshiva, he enrolled at McGill, graduating with a BA in English (in 2008), followed by a year at New York University.  Since then, he has pursued a career as a freelance journalist.  For five years, he served as deputy arts director for the Jewish Daily Forward. Over the past eight years, he has contributed book, theatre and arts reviews and lifestyle stories to numerous prestigious  American publications, as well as the Israeli newspaper Haaretz,”and the Paris Review.
The Schneerson biography is his second book.   In 2016, he published “Have I Got a Story for You” – a compilation of 42 stories – published in Yiddish  in The Forward over its almost 130—year history.  
The stories are an assortment of wartime novellas, avant-garde fiction, and satirical sketches about immigrant life in New York – with short biographies of the contributors. Glinter served as editor of the project – with  the stories being translated into English by leading Yiddish translators who were able to capture the sound of the authors and the subtleties of nuance and context.
Glinter notes that he spent four years doing the research for his current book.  He reports that his Shneerson biography has been generally well-received – although, he adds, there haven’t been a lot of reviews.
“It seems that both followers of Chabad and secular readers appreciate the book,” he comments.
For the past two years, he has been working as the senior staff writer and editor for the National Yiddish Book Centre, which is located in Amherst, Massachusetts.  “We have our own press and newsletter,” he points out.  “We translate newly published Yiddish works into English.”  
  
Readers who may be interested in attending Limmud this year can cal l204 557-6260 or email coordinator@limmudwinnipeg.org. Ticket prices are  $55 for the full day (which includes lunch and snacks) and $30 for a half day attendance.  Reduced rates are available for younnger adults (under 30), students and children.

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Bright future for Israeli-born University of Manitoba Science student Erele Tzidon

Erele Tzidon

By MYRON LOVE Erele Tzidon,  a second year Science student at the University of Manitoba, seems to have a bright future ahead of her. 

Dr. Inna
Rabinovich-Nikitin

The year before last, the Israeli-born graduate of Gray Academy received a University of Manitoba undergraduate research award, which allowed her to pursue research as a member of Dr. Inna Rabinovich-Nikitin’s research team at the Institute of Cardiovascular Sciences, (ICS) researching  the link between pregnancy complications and the risk for heart disease. 


The world-renowned institute, directed by Dr. Lorrie Kirshenbaum, studies heart disease and heart function with the goal of researching means to repair damaged heart cells and prevent heart failure.
This past November, Tzidon was presented with a second award – the Dr. James S. McGoey Student Award – based on the quality of her cardiovascular research at the ICS, which operates out of the St. Boniface Hospital’s Albrechchtsen Research Centre.
“We are very proud of Erele and her achievements,” says Dr. Inna Rabinovich-Nikitin.  “We believe she has a promising future in medical research.”
Originally from Moshav Ginaton in central Israel, Tzidon came to Winnipeg in 2018 with her parents Ofer, formerly  regional manager for a car rental agency in  Israel and now an RBC branch Manager, and Sharon, an emotional therapist in Israel who is currently working as an educational assistant at Gray Academy. Tzidon also has three younger brothers.
The 19-year-od reports that it was through a connection she forged with  Rabinovich-Nikitin at G ray Academy  (where the latter has three children enrolled in the elementary program) that opened the door to a summer position at the ICS in 2023.  She notes that she is at the ICS two days a week and at the U of M three days a week.
“I have always wanted to do research,” she says, “because I have an unlimited number of questions.  And I love working with the great team at the ICS.”
One of the primary focuses at the ICS in recent years has been on women’s heart health.  Three years ago Kirshenbaum created a new research program within St. Boniface Hospital specifically for the study of heart disease in women.  Dr. Rabinovich-Nikitin was the first faculty member seconded to the new research program
In an earlier article I wrote about her in the Post (in 2021), I noted that she, like Erele Tzidon, is originally from Israel, having arrived in Winnipeg in 2016 with her husband Sergey, and their two children (a third child was born here) to further her scientific knowledge through working in Kirshenbaum’s lab.
Rabinovich-Nikitin is graduate of Tel Aviv University with a Ph.D. in biotechnology.
“I was always interested in science, how things work,” she notes.  “I have a particular interest in women’s cardiac health.”
Four years ago she herself was presented with the Winnipeg Foundation’s Martha Donavan Leadership Development Award. The award  is intended to provide leadership development opportunities for women in the Rady Faculty of Health Sciences at the University of Manitoba. Eligible applicants include  women who are full-time or part-time academic faculty members, students of the Rady Faculty of Health Sciences, and students  as well as post-doctoral trainees (including residents), presently enrolled in a program of study within the Rady Faculty of Health Sciences.
In  2022 Rabinovich-Nikitin, was the winner of the Louis N. and Arnold M. Katz Basic Science Research Prize for Early Career Investigators awarded by the American heart Association (AHA).  This award is the highest international recognition of research excellence for an early career investigator to receive, and Rabinovich-Nikitin is the first ever Canadian scientist to receive this award.  
 That same year  she joined the University of Manitoba Department of Physiology and Pathophysiology as an assistant professor, studying heart disease in women. Rabinovich-Nikitin observes that heart disease in women presents itself in a different way than in men.  She notes that one of the new lab’s initial findings was that there is one specific gene that leads to cardiovascular issues in some pregnant women that can point to heart disease later in life, and also have negative implications for the development of their children.  Those children are smaller at birth and, as adults, are prone to hypertension, diabetes and obesity,
“We are looking into how that particular gene increases the risk of heart disease.” she says.
Rabinovich-Nikitin would like to invites readers who may be interested in learning more about women’s heart health to a free program the ICS is offering on Sunday, February 23 at the Wellness Institute at 1075 Leila Avenue from 1:00-4:00. The afternoon will feature speakers, children’s activities and Zumba sessions.
“I would encourage everyone who has questions and wants to learn about women’s heart health to attend,” she says.  
You can find more about the event at https://megaheartevent.com/

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