Connect with us

Local News

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

Continue Reading

Local News

Cheryl Hirsch Katz, Jewish Child and Family Service’s longest serving staffer, set to retire at end of the month

By MYRON LOVE “I loved working at Jewish Child and Family Service,” says Cheryl Hirsh Katz, who is due to retire at the end of June.  “I have always appreciated the warm and welcoming atmosphere here.  I feel that the people working here are my extended family. I am going to miss my colleagues”.
“I have derived great satisfaction over the years to have been able to help many people in our community of all ages through my work at JCFS,” she continues.
After 44 years at the agency, Katz, the longest-serving member of the staff, was given an appreciative send-off at the JCFS’s recent (June 23) Annual General Meeting at the Shaarey Zedek Synagogue.
The daughter of Art and Bess Hirsh, Cheryl grew up in Garden City. She attended Peretz School, then Jefferson Junior High and Garden City Collegiate.  She joined the staff of JCFS in 1981, shortly after receiving her Bachelor of Social Work degree. 
She earned an MSW in 1990.
“I chose to become a social worker,” she recalls, “because I always wanted to be able to help people.”
Katz was originally hired by JCFS to work with newcomers. After a couple of years, she was given responsibility for looking after the needs of older adults.
“I really enjoyed working in older adult services,” she says.  “That is where I spent the bulk of my time at JCFS.”
After ten years as a case worker, she was promoted to a supervisory role.  Later, she was also given responsibility for mental health and addictions programming and settlement services, while keeping the older adult files under her purview.
“As a supervisor, I wasn’t directly involved with individual clients,” she points out.  “I was more involved with programming.  Among the programs for seniors we organized were – for example – sessions on elder abuse, digital storytelling and memory loss.”
She notes that one of the trends she has seen over the last 44 years is that people are living longer and living in their homes longer. A lot more of our clients are living well into their 90s,” she observes.  “We have had to continually expand our staff and the services we provide in order to accommodate the growing demands of an aging population.”   
She also spoke of the mental health needs of seniors and aging Holocaust survivors.
She says that she has mixed feelings about leaving JCFS.  “After so many years working full time, I am going to have to create a new routine,” she comments.
She notes that, now that she is retired, she will have more time to spend with her parents – who are in their 90s.
And then, there are the two dogs to look after. “I will have time now to try new activities,” she says. “ I might learn to play mah-jong.”
She speaks about maybe doing some traveling – although her husband, Murray, is still working full time.
(She and Murray have one daughter, Farah.)
“Retirement may also include some volunteering,” she adds.
It is quite likely, she will be continuing her association with JCFS but in a volunteer capacity. 

Continue Reading

Local News

Gray Academy students shine in provincial, national debating competitions

Gray Academy student debaters with debating coach Andrew Kaplan (l-r):Nate Shenkarow, Maxim Moscalenkov, Este Lamai, Andrew Kaplan, Raya Braunstein, Noa Mednikov

By MYRON LOVE It has been another good year for Gray Academy’s high school students who participated in provincial and national debating competitions.  The best results were recorded by Grade 9 student Noa Mednikov, who finished fourth overall nationally, fourth in interpretive reading, and fifth in persuasive speaking  at the junior National Public Speaking Championship in early May in Vancouver.
 
Last October, in the Junior Provincial British Parliamentary Championship – which was held at St. John’s-Ravenscourt – Noa and her partner, Raya Braunstein, finished third as a team while Raya placed third in individual debating.
 
Their fellow Grade 9 student Maxim Moscalenkov tied for first in persuasive speaking in Vancouver, while the Gray Academy team of Gabe Tapper and Aaron Koplovich finished fifth. Aaron also finished fifth in his individual debate.
 
Earlier, in March, Maxim finished fifth in the Provincial Juniors debating competition, which was held at Balmoral Hall  He and his debate partner, Nate Shenkarow, finished seventh among the teams entered.   Last November, he and partner, Ethan Tenenbein, finished seventh in the Junior Prepared Tournament – just behind the Gray Academy team of Nate Shenkarow and Jack Kay.    
 
At the senior high level in that competition, the team of Jacob Tenenbein and Jonah Novoseller finished fourth and Jacob was recognized as fifth best in an individual capacity. Jonah and Jacob also paired up to win the Asper Cup, which was held at their home school.
 
Jacob represented Manitoba at the Junior National Speech Championship in Vancouver in May and, last October, he and Grade 12 Gray Academy students Julie Krozkin and Daniel Bokser represented Canada at an international debating tournament in Bermuda.
 
 Gray Academy’s debating program was introduced by Linda Martin in 2003.  She also led the debating teams at Balmoral Hall.  In 2011, Martin was succeeded by Gray Academy high school English teacher Andrew Kaplan.
“Andrew has done a wonderful job with the debating program” says Martin, who has a debating trophy at Gray Academy named in her honour, as well as a provincial trophy for best individual junior debater. “Over the years, Gray Academy students have done very well in many local, national and international competitions,” she adds.
About three weeks ago, this writer had the opportunity to sit down with Andrew Kaplan and six of the school’s top debaters while they discussed the benefits of learning how to debate.  According to Noah Strauss – who competed in the Junior Provincials at Balmoral Hall in March, public speaking leaves him with a feeling of accomplishment.    
“It’s a good skill set to have,” he observes. “It builds confidence.”
“A benefit of being able to debate is that you learn how to convince people that you know what you are talking about,” adds Maxim Moscolenkov.
Raya Braunstein notes that being able to debate is a skill that she expects to be helpful in many university courses which she may choose to take.
As Andrew Kaplan notes, the ability to express yourself has a great impact in whatever career you choose to pursue. 
He points out that debating is compulsory at Gray Academy for all Grade 7 and 8 students – and students can continue debating as an option in the higher grades
Of course, competitive debating is not for everyone.  For those students who opt to take that path, the journey begins with internal school debate competition – with the top debating teams and individuals qualifying for local tournaments and – potentially – beyond.
Andrew Kaplan reports that a small number of  high schools in Winnipeg and southern Manitoba have active debating programs – including St. Johns Ravenscourt, St. Paul’s High School, St. Mary’s Academy, Garden City and Maples Collegiates in the Seven Oaks School Division, St. Maurice (a Catholic School), as well as Morden Collegiate and Dasmesh, a Sikh private school.
Kaplan expresses his appreciation to the Asper Foundation and an endowment spearheaded by the Kives Family  for providing funding for the Gray Academy debating program – as well as the Andrew Slough Foundation – which was established by his friends in memory of the outstanding former Ravenscourt student debater and lawyer who passed away suddenly two years ago at the still young age of 38.    
I am confident that our Jewish community can look forward to the continued success of Gray Academy’s star debaters and to the continual emergence of future stars as the times goes by. 

Continue Reading

Local News

Antisemitism has crept into grade school in Canada

Antisemitism in Canada has moved beyond protests and politics; it is now entering classrooms and altering how Jewish children see themselves functioning within them.
A a university student I have observed the experience of my younger brother in grade eight as a Jewish student. Over the past few months, his school has been at the center of several deeply troubling incidents that have made him feel unsafe in our parks, community, and even his school. Swastikas were drawn around the community, in parks and ponds. Additionally, an older man, who claims to be a pro-Palestinian influencer, stood outside his predominantly Jewish school wearing a keffiyeh, filming a video which then circulated between students on TikTok. 
This same man later showed up to our local Jewish community center in keffiyeh to allegedly watch his son play basketball where my brother and many of his classmates go for their lessons, basketball games, and Jewish events. These moments made him and his peers feel watched and targeted just for being Jewish. Local political representatives condemned the incidents and raised awareness about antisemitism, but the fear among students didn’t go away. The feeling of being targeted for simply existing has been taught to my brother, something my parents had tried their hardest to escape from. 
Most recently, my brother was chosen to represent his school at a regional science fair. When one of the judges arrived wearing a keffiyeh, he froze. For many, including my brother after the incidents he has faced, the keffiyeh represents a political message. But even more so for my younger brother, it is tied to the fear and intimidation he had already experienced. He felt nervous, distracted, and unsure of how to act.
This is not about silencing political expression. It is about a child who came to share his ideas and left feeling uncertain and afraid. It is about the atmosphere forming in Canadian schools, where Jewish students are being made to feel targeted and unwelcome.
His school made an effort to address the incidents, but the impact is lasting. Posts on social media, much can be very vague at times about inclusion cannot fully undo the feeling of being singled out. A kind word from a teacher does not erase the fear that builds when threats are left unspoken but deeply felt.
I am writing this as a sister who watched her younger brother lose a moment that should have been filled with confidence and pride. He deserved to feel safe. So do all Jewish students in this country.
Moving forward, schools must take concrete steps to protect all students. Antisemitism cannot only be addressed when it becomes violent or overt. It must also be recognized when it appears as intimidation, symbolic targeting, or political messaging that creates fear among students. Children should never have to question whether they are safe in their own classrooms or community spaces.
Events that are meant to support and celebrate students must remain focused on them. Individuals who feel the need to bring political symbols or messages into school grounds or children’s events should not be welcomed in those spaces. Schools must make it clear that their environments exist to support learning, safety, and inclusion, not to host agendas that can intimidate or isolate students.
Administrators and educators must develop clear guidelines for identifying and responding to antisemitic behavior in all its forms. This includes strengthening security measures, offering ongoing staff training, and engaging directly with Jewish families to understand their concerns. Inclusion is not a one-time statement. It is a responsibility that must be reflected in everyday decisions and actions. No child should ever feel unsafe or unwelcome because of their identity.

The author is a Campus Media Fellow with HonestReporting Canada and Allied Voices for Israel who lives in Toronto.

Continue Reading

Copyright © 2017 - 2023 Jewish Post & News