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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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Shalom Residences Foundation to host third annual donor appreciation evening

Shalom Residences treasurer Elaine Paul

By MYRON LOVE On Tuesday, June 16, Shalom Residences  Foundation Inc (SRFI) will be hosting its third annual Donor Appreciation evening.  Donors and other Shalom Residences  supporters can look forward to chilling to the music of local singer/songwriter David Grenon (aka Soul Bear), who will be performing songs by Billy Joel, Elton John and other well-known artists.
For readers who are not yet familiar with Shalom Residences, the organization was originally created to care for intellectually challenged Jewish young adults.  The vision was to provide them with a Jewish environment – strictly kosher group homes where all the Jewish holidays are observed and celebrated.
One of Shalom Residences’ objectives has always been to develop a community in which individuals with intellectual disabilities are fully included, self-actualized, and valued in all aspects of life.
The concept has been a remarkable success.
Shalom Residences was founded in 1980 by six far-sighted couples, including Thelma and Ernie Bronstein, Dolly and Zivey Chudnow, Min and Joe Fromkin, Roberta and Larry Hurtig, Elaine and Bobby Paul,
and Sybil and Frank Steele. The original Shalom Home was a converted house on Cathedral Avenue.

“Thelma Bronstein’s determination and dynamism contributed to making it happen,” says Elaine Paul, currently Shalom Residences’ treasurer (and for the past 20 years, the organization’s leading fundraiser).
I remember the home’s official opening.  This was shortly after I started writing for the Jewish Post.  Rabbi Charles Grysman affixed the mezzuzah  to the door frame.
Today, the organization operates six group homes housing 19 residents as well as 12 residents in supported independent living arrangements.
While the operations today are largely funded by the provincial government – which means that the residences have to be open to accepting non-Jewish clients as well (just over half of the residents are Jewish) – the Shalom Residences Foundation funding supplements the  government contribution – providing financial support for increasing staffing levels when needed, as well as extraordinary expenditures and contingencies. The Foundation has also provided the down payment for the purchase  of new housing when necessary. .
The necessity of fundraising was evident right from the beginning.   Elaine Paul recalls that the first Manitoba Marathon –  in which all the founding parents were involved –  provided the funding for the mortgage at 175 Cathedral Ave.
“We worked with Helen Steinkopf and John Robertson to develop the marathon,” Paul remembers. ”For several years,  Hy Kravetsky and I worked handing out water to the runners.”
Paul relates that it was Zivey Chudnow who was instrumental in starting up Shalom Residences’ annual fundraising. “Three of Zivey’s friends,:Norman Tatleman, Sam Ostrove, and Gary Levinson, asked how they could help,” she recalls.  “Their idea was to have a fundraising dinner.  We combined the dinner with a lottery. We sold 60 tickets at $1,000 a piece and paid out $15,000 to the winning ticket and lesser amounts to other lucky winners.”
The organization also held annual well attended fundraising teas.   
 
Paul reports that, for years, Chudnow was Shalom Residences’ best fundraiser – with honourable mention to Avrum Katz, Frank Steele, and the late Joe Elfenbaum.  Paul took over the role 10 years ago – again with honourable mention to SRFI board members, Dr. Allen Kraut, Peter Leipsic, Donna Chudnow, Jon Feldman, and Mickey Rosenberg. 
  
In addition, the goal was, and remains empowering adults with intellectual disabilities to live meaningful, dignified lives in community-based homes in Winnipeg, enriched by Jewish values.
Charles Tax, the SRFI’s long time president, notes that in 2017, the organization created an endowment fund with the Jewish Foundation of Manitoba. “At the time, we transferred more than half of our assets to the JFM,” he says.  “We continue to make contributions to our fund.”
 
He notes that the annual dinners came to an end with the 20230 Covid lockdowns.  The donor appreciation evenings were started in 2023. 
“One of our goals is to acquire one or two more houses in the south end,” Tax adds.
 
Readers who may be interested in attending the donor appreciation evening or otherwise supporting SRFI can contact the office at 204 582-7064 or via email (admin@shalomresidences.com).
 
 
 
 
 
 
 
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Debbie Maslowsky playing lead role in upcoming Dry Cold Productions musical

By MYRON LOVE For the past 40 years Debbie Maslowsky has been entertaining Winnipeg audiences – both Jewish and non-Jewish, with her acting and singing.  Arguably Winnipeg’s queen of musical theatre is returning to the stage on May 13 in a lead role in Dry Cold Productions’ upcoming “Kimberly Akimbo”.
Maslowsky is enthusiastic about the Tony-winning production, which debuted on Broadway in November 2022.  “It’s a gem of a musical,” she says of the production crafted by the musical team of  composer Jeanine Tesori and lyricist David Lindsay-Abaire.
 
The subject itself is not – on the surface – uplifting. As Maslowsky describes it,  “Kimberly Akimbo” is the story  of a teenager suffering from a very rare condition – progeria – also known as the aging disease.  The genetic condition causes children to age at an accelerated rate causing them to die of old age while still in their teens. For those readers who may recall Rabbi Harold Kushner’s book, “Why Bad Things Happen to Good People” – written years ago, Kushner was responding to the death of his own son from progeria.

In the hands of Tesori and Lindsay-Abaire though, Maslowsky notes, the show is about mindfulness and living day by day.  In the production, Maslowsky explains, “Kimberly is trying to live as normal a life as she can despite her illness. Her life is further complicated by a dysfunctional family. Her parents are dealing with their own issues. Then there is the madcap aunt who develops a complicated and hilarious plan to make money for a family road trip, raise funds for choir costumes – with some left over for herself.

“The play is very funny,” Maslowsky comments, “but also poignant.  Kimberly knows that she most likely won’t live much beyond 16.  Therefore, she wants to live every day to the fullest. She wants to live every day in the now.  At the same time, she doesn’t want to hide from reality. She doesn’t want special treatment. She also doesn’t want people – such as her parents – trying to pretend that everything will be okay.”

Maslowsky last appeared on stage in Winnipeg Jewish Theatre’s one-woman production of “A Pickle” in the spring of 2023. That was the true story of a Jewish pickle maker living in Minnesota who had to fight to get her pickles included in the state fair pickle competition, which tried to disqualify her because her pickles were made the Jewish way through a  brining process that the non-Jewish judges refused to accept. 
In the interim, Maslowsky has been focusing on her longstanding business as a trade show, conference  and event manage,r as well as picking up some singing gigs. She reports that she began winding down her business last fall.

She speaks highly of her younger cast mates. “They are an amazing group of young people,” she says. “For some of them, this is their first show.  I myself am still learning new things after all these years.”
Maslowsky will next be appearing in the joint Winnipeg Jewish Theatre-Rainbow Stage production of “Fiddler on the Roof” in September.  “I played one of the daughters years ago in an earlier Fiddler production,” she recalls.  “I feel like I am coming full circle.”
 
Dry Cold Productions was founded by Donna Fletcher and Reid Harrison (now retired) more than 25 years ago. The company stages a yearly musical theatre production – sometimes edgy – which has played on Broadway and is new to Winnipeg audiences.
The Dry Cold website cautions that “Kimberly Akimbo” contains “strong language (with frequent profanity), mature humour, and references to sexual activity”.
“Kimberly Akimbo” is scheduled to run May 13–17, 2026 at the Prairie Theatre Exchange. Tickets can be purchased by contacting  Dry Cold productions online.

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The second Bar Mitzvah: Better than the first

Gerry Posner and Ted Lyons

By GERRY POSNER As we pass down the corridor of life, there are certainly times we can identify as moments we will never forget. I had such a moment on April 11 at my second Bar Mitzvah, at the Shaarey Zedek Synagogue, shared with Dr. Ted Lyons, or E. A. as I called him over the years. We were celebrating this life cycle event at the very same synagogue as the first one, that is – the Shaarey Zede. For me, it was some 70 years ago or 25,557 days – from April 21, 1956 to April 11, 2026. The notion of returning to the original place of Bar Mitzvah 1.0 was too powerful a force, causing me to abandon my plan to do this in Toronto where my wife, Sherna and I have lived for the last 13 plus years.

It was quite the weekend. We started just before Erev Shabbat with photos of our two families on the bimah. Ted had his whole family there, including his daughter Mara, her husband Sheldon, and their two daughters, as well as his son Sami, his wife Rose, and their three kids, all of whom live In Calgary, not to forget his sister Ellen and her husband Howard Goldstein, from Toronto. Our three kids: Ari, Rami and Amira, all of whom live in Toronto, along with two of my grandchildren, as well as my brother Michael from Toronto were also present.

After the Shabbat service, we stayed on in the building for our Shabbat dinner. There were 23 of us, including Michael’s partner, Ruth Grubert, (formerly Mozersky), also a former Winnipegger, as well as Rabbi Mass,his son Ranan, Rabbi Carnie Rose and his wife Pauline. It was a warm group and the dinner was gobbled up and appreciated by all of us. We were all surprised when independently, the respective grandchildren of the Bar Mitzvah “bochers” presented both of us with a kind of tribute – funny and sincere in their affection for their Zaidas.

Then came the big day. It lived up to and even exceeded my expectations. It was a sell-out crowd. I was overwhelmed just at that fact. The only thing missing from the building was the electronic ark. The respective families all participated with aliyahs and indeed Torah readings by Sami Lyons and the 83-year-old Bar Mitzvah boy Ted Lyons. Now, “leyning” from the Torah was not something Ted had done at the first go-round 70 years ago. (In fact, almost all of us were deficient in that area).
One particular moment during the service was especially meaningful for Sherna and me. In the first part of the service, there is a prayer called “Mi Chamocha.” My son Ari had written music for that prayer several years ago and now he was at Shaarey Zedek, where he had his Bar Mitzvah long ago. This time though the clergy had arranged to use his music and to sing his melody. (It had been used many times previously, but without Ari. ) Not only that, he was invited to play his composition at the service as Cantor Leslie Emery sang it. Those few moments – as we watched and listened, at this – my second Bar Mitzvah, at a place where my parents had been members for years and whose names are on the memorial plaque in the chapel, well, that was powerful, to put it mildly.

Ted and his family had various honours as did my family. I was given the Haftorah to chant. Now, I have few talents, but I can chant a Haftroah (not the most marketable skill), so that was not that much of an obstacle for me. In fact, I rather enjoyed doing this part of the service. Rabbi Rose had also given me permission to deliver a D’var Torah on the portion of the week, “Shemini”, and to discuss the meaning of this, my second Bar Mitzvah. Once I had the mic and the stage, I was ready to go in spite of my wife’s protestations that it was too long. And, in fact, as I rolled along into my Haftorah, after about 10 minutes, my parter in the double Bar, Ted, came up from behind me where he was sitting, and nudged me gently, or to put it more accurately, gave me the hook, announcing that it was time to wrap up. It was kind of comical, in fact. I got a large charge from that sudden intervention. To top it off, as I had been speaking, I noticed a congregant on my left near the front who had apparently passed out. It was alarming to me at first, but the medics came and were able to revive this person. I was told later that other first words out of the mouth were “Has he finally finished?”

We concluded the day with a rather large kiddish luncheon highlighted at least for me by traditional party sandwiches, which were a staple of the kiddishes of my youth. I met with so many people of my past, which was a treat and a half for me. I was so into the moment that It was hard to get me out of the building.

As I reflect on the day and the service, I recognized that for all of us, we have times in our lives, whether it be an hour, a day or a week, that we will never forget. This day was for me one such moment. It is etched in my memory to be relived through the Youtube video now in my possession. The gift that keeps on giving, I say.
My first Bar Mitzvah was good, for sure. This one was far better. I knew what I was doing.

Post script (After Gerry had sent us his story, he sent us something else that he said should have been included in the story): True, Ted and I had the Bar Mitzvah no 2. But we only had it because there was one person who did the real work and yet received no credit. She made all the arrangements with the synagogue for both the Friday night Shabbat dinner and the kiddish lunch after the service. She dealt with various people in the synagogue and basically took charge of our simcha. I speak, of course, of Harriet Lyons. That I failed to mention her was due to my excess focus on the eating of the party sandwiches and not enough on the reason we had them in the first place. Harriet teaches the weaving of tallits, but she stands tall in the arranging of Bar Mitzvahs.

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