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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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Karina Gould – vying to be next leader of the Federal Liberals, has a Jewish father – and her parents met on a kibbutz!

By BERNIE BELLAN In January 2018 I conducted an interview with the late Jim Carr who, at the time, was Canada’s Minister of Natural Resources. I asked Carr whether there were any other Jewish members of the Cabinet?

Carr said that Karina Gould, who was the Minister of Democratic Institutions in 2018, had a Jewish father. I didn’t know much about Gould back then, beyond recognizing her name, but the recent announcement that she has decided to enter the Liberal leadership race might be of particular interest to Jewish readers.

Gould has held a number of portfolios within the Trudeau government, most recently as House leader.

Now 35, while Gould’s entry into the Liberal leadership race would be considered something of a long shot, her relative youth – along with her experience (she has been a Member of Parliament since 2015), might make her a plausible alternative to the two more prominent candidates in the race: Chrystia Freeland and Mark Carney.

With Gould’s decision to enter the race to replace Justin Trudeau as Liberal leader, I thought it might be interesting to explore her Jewish roots.

In a 2021 article on the CJN website, the following was written about Karina Gould:

Gould, the member for Burlington, was first elected in 2015. She has previously served as Minister of International Development and Minister of Democratic Institutions.

Jewish on her father’s side, Gould told The CJN in 2015 that while she’s not “an active practitioner of Judaism,” she maintains her heritage through celebrating Hanukkah, Purim, and Yom Kippur.

Her paternal grandparents were Holocaust survivors from Czechoslovakia. Her grandfather was deported to Theresienstadt, then to Dachau and Auschwitz. Separated during the war, her paternal grandparents were reunited afterward.

Her father met her mother, who is from Germany, while both were in Israel volunteering on Kibbutz Naot, where the sandals are made.

Gould visited Israel on a Birthright trip and stayed longer for a personal visit. “Israel is a beautiful country,” she said. “It’s unique in the world. It has difficult challenges.”

She said she believes her family heritage plays a big role in shaping her political values.

“My family was accepted and welcomed into Canada after a difficult experience,” she said. “Canadian values of tolerance and diversity were not just important for my family, but for others. Canada provided the opportunity to grow and to thrive.”

Gould was front and centre during the 2019 visit to Canada of then Israeli President Reuven Rivlin.

She noted to Rivlin that since the free trade agreement between Canada and Israel was signed in 1997, the value of two-way trade had tripled, to $1.9 billion.

And under the Canada-Israel Industrial R&D Foundation, the two countries have funded close to 60 projects over the last dozen years, she added.

Ties between Canada and Israel “are long, deep and mutually beneficial,” she said.

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Multi-talented Kelly Robinson continues to shine both on stage and behind the scenes

By MYRON LOVE For regular readers of my articles in The Jewish Post & News over the years, Kelly Robinson’s name is most likely associated with the growing number of students she has taught who who have stood out from year to year at the annual Winnipeg Music Festival in March. 
“I teach voice lessons,” says Robinson.  “I’m grateful to have such a full studio — over 50 students each week — and it’s delightful to see each student progress and grow their confidence and ability. Many of my former (and some current) students perform professionally themselves. It’s lovely to see.”
The teacher, moreoverr, is also a performer on local stages and behind the scenes. In recent years, she has appeared on stage in performances with the Manitoba Opera Chorus and the Manitoba Underground Opera, Rainbow Stage, Little Opera Company, Dry Cold Productions, and the Winnipeg Fringe Festival.  In August, she notes, she sang the role of “Mother” in the opera “Hansel and Gretel” with Manitoba Underground Opera at the Winnipeg Art Gallery.  Most recently, she was Music Director for the Manitoba Theatre for Young Peoples  “A Year With Frog and Toad” in December. 
 Currently, she reports, in a real tour de force, she in playing a role on the production team in the Royal Manitoba Theatre Centre’s new production of the musical version of the movie “Waitress” (which starts January 7 and runs until February 1) behind the scenes and she will also be appearing on stage.  “I am the Assistant Music Director,” she says.  “I worked on the music with the singers in rehearsal to help everyone to sound their best. I played the piano for rehearsals.  I am playing keyboard in the orchestra for all of the performances.”
 In addition, the “Waitress” band is on stage, interacting with the cast. “That should be a lot of fun,” she comments.
For the daughter of Terry and Freda, a musical career was not on her radar growing up largely in River Heights.  The graduate of the Hebrew bilingual program at Sir William Osler School (which lately was transferred to Brock Corydon School) told Winnipeg Fee Press opera reviewer Holly Harris in an interview that appeared The Jewish Post & News in 2017 that her original career goal was to become a dentist.
She was introduced to musical theatre by her drama teacher at Grant Park High School, who encouraged her to audition for that year’s production of “All About Cats”.  To her surprise, she was cast in a lead role.
Despite this early introduction to the world of musical theatre, Robinson was still largely fixated on a career in the sciences.
In university, she pursued a four-year degree in microbiology at the University of Manitoba – and excelled.  Toward the end of her science program, she recounted to Holly Harris and, despite being awarded full academic scholarships and the prospect of her own prestigious research lab, Robinson realized that her true love was music. She changed course and auditioned for the University of Manitoba’s Faculty of Music.
She did earn her B.Sc. – but she also completed a music degree with a major in Classical Voice Performance and a minor in Composition.
“It was really neat,” she told Harris – about composing music for a string quartet.  “Hearing it performed was inspiring. I realized that, in music, there were endless possibilities.”
She furthered her musical education with studies in contemporary vocal styles through Boston’s Berklee College of Music. (Coincidentally, her husband, Josh Eskin, whom she met while both were teaching at a St. Boniface music school, studied guitar at that same institution.)
As a singer, Kelly Robinson has demonstrated a remarkable versatility. In addition to opera and musical theatre, she has done Gilbert and Sullivan – winning the Winnipeg Music Festival’s Gilbert and Sullivan Society Trophy in 2002, a tribute to her Zaida, Harold King. She has fond memories of him singing songs from Gilbert & Sullivan’s “Pirates of Penzance” to her when she was young.
Outside of music, Robinson enjoys crocheting, making jewelry, reading and spending time with Josh and their children – 15-year-old Juliet – also a Winnipeg Music Festival winner – and 11-year-old Dylan.
She is also the High Holy Day Choir Director at Congregation Etz Chayim.
After “Waitress”, Robinson reports, her next project will be serving as Music Director for Dry Cold’s production of “Dogfight,” scheduled for April. The musical – based on the 1991 film of the same name – revolves around another waitress and her encounter with three GIs about to be shipped out to Vietnam in the early days of the war – and the day before the assassination of President Kennedy.  
According to the blurb from the theatre company, “ ‘Dogfight’ deals frankly with serious and important subjects that are still relevant in our fractious times of political instability, cyber bullying & intolerance of others”.
It sounds like another winner from the local musical theatre company that focuses on premiering the latest new musicals.

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Beloved Chazan Sol Fink celebrates 100th birthday

Sol & Rachel Fink

By MYRON LOVE On December 24, Sol Fink, who both as shoichet and chazan served our community for many years, celebrated his 100thbirthday. In keeping with his low key approach to life, Fink commemorated the occasion only with those closest to him – his wife, Rachel, his children, grandchildren, and great-grandchildren, as well as his last remaining sibling, Ruth Zimmer.
Sol Fink is a man who is infused with a sense of gratitude for his long life, his family and Canada – his adopted home which welcomed him, his three sisters and his  parents after their experiences in the Holocaust. 
Perhaps the most remarkable thing about Fink and his sisters is that he is now the third of the siblings to have turned 100.  His older sisters, Sally Singer and Ann Novak, had previously passed the 100-year milestone – and Ruth is not far behind.
The four Fink siblings were the world’s oldest siblings to have survived the Holocaust.
The Fink family was among the lucky ones – although they wouldn’t have considered themselves “lucky” that day in 1940 when they, along with other Polish Jews who had moved to the Russian-controlled eastern half of Poland (as compared to those who were already living in the area) were forced by the Russians into rail cars and shipped off to Siberia. 
The Fink siblings. the children of Shaindel and Zecharia Fink, grew up in the town of Sanok in southeastern Poland, where Zecharia Fink worked as a kosher butcher.  In the early days of the Nazi invasion the family relocated across the San River to Shaindel’s parents’ home.  
Sol and his sisters did have a younger brother, Eli. Sadly, when the rest of the family wasa about to board the train, the little boy ran back to stay with his grandparents.  He perished in the Holocaust, along with 80 other members of the family.
Three years ago, Sol’s niece, Carol Sevitt, published a story in the Canadian Jewish News chronicling the siblings’ life’s journey.  A year later, Anne’s son, filmmaker Allan Novak, created a documentary which was shown at the Berney Theatre – among other venues in North America and Poland.
The family spent a year in a prison camp in Siberia.  After the Nazis attacked Russia the Fink family was freed, but had to remain in Siberia for the duration of the war.  After the war the family ended up in Germany.          `
“We had an aunt and uncle, Clara and Jack Linhart, who were living in Winnipeg and they brought us here,” Sol Fink says.

 That was in 1948.
Fink’s first job in Winnipeg was working for a construction company putting down hardwood flooring – an occupation suited to his ability to fix anything.  In Siberia, he had been a blacksmith.
What he remembers about this first job was sitting on the roof of the housing he happened to be working on, savouring  a big bun stuffed with perogies, which he would wash down with a quart of chocolate milk. He spent every second of that precious half hour enjoying the luscious foods he had been denied for six years in Siberia.
“We were always hungry in Siberia,” he recalls.  “To this day, I still love the taste of bread.”
After a short stint in construction, Fink took his handyman skills to work for Adelman Furniture (which later became Penthouse Furniture).  “I was doing repairs and servicing,” Fink remembers.  “I was given a company truck to drive and went all over the city.”  
In the mid-1950s, Fink went into business with his brother-in-law, Morris Singer.  They purchased a corner grocery called Lloyd’s on Sargent and Langside. Later, they operated a store on Inkster and McPhilips.  
It was while operating Lloyd’s Grocery that Sol Fink was introduced to the love of his life. “George Rubenfeld had come to work for us,” Fink recalls.  “One day, he tells me that his sister is arriving from France.  He said that she was beautiful and brilliant and wanted me to meet her. He invited me to Shabbat supper with the family.”
Fink was smitten with Rachel Rubenfeld.  After a short courtship, he proposed to her one evening at St. John’s Park.  She said that she couldn’t marry him because she had to look after her parents.  His response – “we will look after them together.”
He was true to his word. After his father-in-law passed away in 1971, his mother-in-law came to live with Sol and Rachel and spent the last 22 years of her life with them.
He was equally solicitous of his own parents.  
It was only after retiring in 1985 that Sol Fink began his second career as a chazan, Torah reader and shoichet. In an earlier interview with The Post, five years ago, Fink said that he became a chazan “out of necessity”. 
“The chazan at the Bnay Abraham Synagogue had just quit,” he recounted.  Rabbi Weizman and the president asked me if I could come to shul on Shabbats to help out.”
When, shortly after, they asked him to lead Yom Tov services, he remembers being unsure whether he could do it. “I went to ask my uncle, Moshe Langsan, his opinion.  He knew the niggunim.  He listened to my davening and encouraged me to take up the challenge.”
Rabbi Weizman also encouraged his new chazan to become the Torah reader for the Shul.
Around the same time, the community’s shoichet quit and moved to Toronto.  “My brother-in-law, Morris, suggested to the rabbi that I might be a suitable replacement,” Fink recalled.  “In the grocery store, we sold a lot of meat.”
 
Fink remembered being really disturbed by the scene at the slaughterhouse the first time that he went with Rabbi Weizman.   He wasn’t sure that he wanted to go back.
“Rabbi Weizman encouraged me to come back with him and help out,” he says. “After three or four days, I was used to it.”
Fink and his partner, the late Shlomo Benarroch, worked as the community’s shoichetim for 20 years – usually going out one day a week to the slaughterhouse in Carman– until the community stopped schechitah about 20 years ago.
After the Bnay Abraham merged with two other Conservative congregations (the Beth Israel and the Rosh Pina) in north Winnipeg in 2002, Fink moved to the Chavurat Tefila.  For a number of years, he led Yom Tov and Shabbat services and was one of the regular Torah readers on Shabbat at the small congregation.  About fourteen years ago, he and Rachel sold their north Winnipeg home and moved into a condo in south Winnipeg.  Despite living south, he continued to lead Yom Tov services at the Chavurat Tefila. (Over Yom Tov, he and Rachel used to stay with his sisters (whom he always called “the maidlach”) who lived nearby.
The last Yom Tov service that he led at the north end shul was just six years ago when – at the age of 93 – he had the pleasure of leading the services with his grandson, Avi Fink-Posen.
When leading services, Sol Fink always tried to daven with kavanah. “I was always aware that I was praying to Hashem for the congregation and the Jewish People as a whole,” he says. 

As a father and grandfather, if you ask Sol’s children or grandchildren their opinion of him, they will tell you that he is the most loving, positive, caring, honest and hard-working person they know. What you see is what you get.
 At the age of 100, Sol Fink is still hale and hearty and he and Rachel still look much younger than they are. Up until a couple of years ago, Fink was still swimming every day at the Rady JCC.  Fink looks at least 20 years younger than he is.  He and Rachel still keep fit exercising daily at home and Rachel makes sure they eat healthily. And he still puts on tefillin and davens every morning. 
As the saying goes – may they both live to 120!

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