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
Despite JNF Canada losing its latest appeal in the Federal Court of Canada to have its charitable status restored, it will continue the appeal process all the way to the Supreme Court of Canada, if necessary
By BERNIE BELLAN (June 17, 2025) Readers may recall that last August, in what was a shocking decision by the Canada Revenue Agency, JNF Canada lost its charitable status, which meant that it could no longer issue tax receipts for charitable donations. Further, JNF Canada was facing the prospect of having to wind down its operations and disburse all its assets by November 13, 2024, or face a 100% tax.
At the time, Canadian Jewish News reporter Ellin Bessner wrote a detailed examination of what had happened and why it happened.
Bessner noted the following reasons that the CRA had revoked JNF Canada’s charitable status:
“The agency’s findings in the audit ranged from where the charity’s books and records had been kept in 2011 and 2012 (mostly in Israel, which was a no-no), to what language the paperwork and receipts were kept in (mostly in Hebrew, which is not illegal but makes work difficult for auditors), to the conclusion that JNF Canada’s founding charitable purposes of relieving poverty in Israel by paying the salaries of indigent labourers, were not being met.”
Why would the CRA not enter into negotiations with JNF Canada over a new compliance agreement?
In an email received from Lance Davis, CEO of JNF Canada, on June 6, 2025, however, Davis addressed the particular concern to which Bessner referred in her August 2024 article – that JNF Canada was not meeting its “charitable object.”
Davis wrote: “The revocation is based on the CRA’s belief that our current charitable objective is no longer an acceptable charitable objective (after being acceptable for almost 60 years). It is not that the objective isn’t being met. It should be noted that we offered 10 new charitable objectives, which were previously approved for other charities, but the CRA never acknowledged these new objectives and continued to reject our requests for a compliance agreement. “
The CJN article offers more reasons for the CRA decision to revoke
Bessner’s article continued: “Another major issue was that because of missing paperwork and superficial oversight on the ground in Israel, it was felt the Montreal-based JNF Canada hadn’t been in control of or directing its own operations overseas. CRA believed the charity was acting merely as a funnel of money to the Jerusalem-based agency, the Jewish National Fund/Keren Kayemeth LeIsrael, which ran the projects.
“A further red flag for auditors were several projects in 2011 and 2012 that benefited the Israel Defence Forces, such as construction of buildings and green areas on IDF military bases. Registered charities are not permitted to support a foreign military financially, under Canadian laws. Some other projects were located in the West Bank and on other disputed land, the CRA found, something which Canada’s foreign policy frowns on.
Bessner further noted that “JNF Canada disagreed with the CRA’s view of that last category—and still does. But in 2019, the charity assured the public that it had stopped funding both kinds of projects after 2016, in order to comply with CRA requirements in good faith.”
A 2019 internal CRA memo says JNF Canada’s charitable status would not be revoked until the appeals process was exhausted
Immediately upon learning that the CRA had revoked JNF Canada’s charitable status, representatives of JNF Canada launched a series of legal appeals to have that decision reversed.
What is even more perplexing, however, notwithstanding the various reasons the CRA may have given for revoking JNF Canada’s charitable status, is why the CRA took that step when apparently, in August 2019, senior administrators within CRA had decided not to revoke JNF Canada’s charitable status until such time as JNF Canada had exhausted all its appeals including going so far as appealing to the Supreme Court of Canada.
In an internal email circulated among three CRA employees in August 2019 (shown here), and which was written by Melissa Shaughnessy, who is currently listed as the “Acting /Manager, Charities Directorate, Compliance Division | Canada Revenue Agency,” Ms. Shaughnessy wrote: “I confirmed that our process would then be to await the decision of the objection and any possible subsequent FCA (Federal Court of Canada)/SCC (Supreme Court of Canada) appeals before taking any further steps toward revocation.” (emphasis ours)
As Lance Davis noted in an email sent to me on June 6, JNF Canada had already begun an appeal process to avoid having its charitable status revoked by the CRA. When the August 2024 decision to revoke its status was suddenly issued, notwithstanding the decision among CRA administrators, evident in the memo seen here, to await the results of the entire appeals process to which JNF Canada was entitled before revoking its charitable status, JNF Canada was blindsided.
Davis noted, with reference to what was written in that August 2019 CRA memo: “This approach was consistent with past practice of the CRA as reflected in its policies, publications and internal communications, and we relied on this assurance in our decision-making. Nonetheless, in 2024, the CRA published our revocation despite our Appeal 1 being active. …Appeal 2 is the appeal that we’ve now had two hearings on, both of which ruled on jurisdiction but not yet on the merits of revoking our status. We are currently determining with our leadership if we will proceed with another hearing to rule on the merits of our case, which we still believe are strong.”
We asked the CRA why that August 2019 memo which said revocation would not take place until JNF Canada’s appeals process in the courts was exhausted was reversed?
We contacted the CRA media department on June 10 to ask why, if the August 2019 memo gave clear indication that the CRA was not going to revoke JNF Canada’s charitable status until such time as all appeals by JNF Canada in the courts had been exhausted, the CRA had gone ahead in August 2024 and revoked JNF Canada’s charitable status? (We attached a screenshot of that August 2019 memo in case the CRA would take the position that there had never been any decision to await the results of JNF Canada’s appeals process.)
It took six full days for a media representative of the CRA to respond. In a typically Kafakaesque manner the CRA media representative simply entirely avoided dealing with the question about the memo, writing instead:
“The confidentiality provisions of the Act prevent the CRA from commenting on specific cases; however, we can provide you with the following general information.
“As mentioned in our response of August 30, 2024, we can confirm that the charitable status of the Jewish National Fund of Canada Inc. / Fonds National Juif du Canada Inc. (the Organization) was revoked effective August 10, 2024, in accordance with the Act.
“The CRA’s decision to revoke an organization’s charitable status is not taken lightly. Every organization facing revocation has the right to seek recourse.
“For more information about revocations, please visit: Revoking registered status – Canada.ca.
“The courts provide Canadians with an independent review of disputed issues, and court decisions serve to clarify the law or resolve disputes between the CRA and taxpayers. The CRA does not comment on the specific details of court cases to respect the confidentiality provisions of the Acts we administer. Publicly available information on this case may be obtained from the courts.”
However, as we noted in a previous article on our website, the CRA did release 358 pages of documents to us pertaining to its decision to revoke JNF Canada’s charitable status, following its decision to revoke. As Jonathan Rothman, writing on the CJN website, noted: “The communications branch of the CRA recently provided 358 pages of its correspondence with JNF Canada. Officials said that due to confidentiality restrictions in the Income Tax Act, the CRA can release this material only after revoking a charity’s status. ”
So, it is somewhat specious for the media spokesperson to claim that “The CRA does not comment on the specific details of court cases to respect the confidentiality provisions of the Acts we administer” when, in fact, the CRA was quite willing to release 358 pages of documents explaining why it had suddenly revoked JNF Canada’s charitable status in August 2024. The question remains: What changed from the time that memo was circulated in August 2019 among CRA administrators and August 2024, when JNF Canada’s charitable status was revoked, without any prior notice given to JNF Canada that was about to happen?
The appeals process continues to take its course
It is somewhat confusing to follow the appeals process which JNF Canada undertook. One was an appeal through the Federal Court and another was an appeal through the Federal Court of Canada.
As Ellin Bessner explained in a November 10, 2024 article which appeared on the CJN website,
in November 2024 the Federal Court turned down JNF Canada’s request that the CRA’s decision to revoke its charitable status be reversed. Bessner wrote that “Jewish National Fund of Canada has lost its first major legal battle to stop the tax department’s revocation of its charitable status, which came into effect three months ago.
“Late in the afternoon of Friday, Nov. 8, a Federal Court judge dismissed JNF Canada’s application for a judicial review—and the judge also dismissed a request for an injunction to force the Canada Revenue Agency (CRA) to remove the official revocation notice that was printed in the Canada Gazette on Aug. 10.”
But, as Lance Davis noted in his June 6 email to me, “the November decision was not on the merits of our case. It was simply that the Federal Court was not the correct court to rule on our case and so the motion was dismissed and we were advised to take our case to the Federal Court of Appeal.”
However, early in June, JNF Canada lost its appeal to the Federal Court of Canada to have its charitable status restored.
Again though, as Davis explained to me, “This recent ruling was again only on jurisdiction. We appealed the Federal Court’s first decision that it did not have jurisdiction. The reason our lawyers chose this route was we truly believed the Federal Court was the correct place to start our judicial review. Time is of the essence as we do not want to operate as a non-profit indefinitely. Both CRA and JNF agreed that since the FCA was hearing our case, they should rule on the merits and not on whether or not the FC had jurisdiction. They declined to rule on the merits and instead, simply upheld the FC ruling that the FCA is the correct court to hear our case.”
Letter sent to JNF Canada supporters on June 4 about the most recent court decision
However, with that most recent court decision going against JNF Canada, a letter was sent to JNF Canada supporters on June 4 by Lance Davis, and Nathan Disenhouse, President, JNF Canada. That letter noted that “This week, the Federal Court of Appeal dismissed our appeal, concluding that the Federal Court did not have jurisdiction over our claim that the Canada Revenue Agency’s (CRA) actions deprived JNF Canada of procedural fairness.
“The merits of our case – our arguments as to why the process afforded to us lacked procedural fairness – have still not been ruled on.
“While we are, of course, disappointed by this result, and while it is not the result we had expected, we always knew it was a possibility. For this reason, we have been actively planning next steps.
“When the revocation of our charitable status was published in the Canada Gazette on August 10, 2024, we indicated that we had been blindsided. This is because in 2019 the CRA clearly and explicitly assured JNF Canada that the CRA ‘would not proceed with a revocation until JNF had exhausted their appeals process in Federal Court of Appeal or Supreme Court of Canada.’ (emphasis ours) This approach was consistent with past practice of the CRA as reflected in its policies, publications and internal communications and we relied on this assurance in our decision-making.
“It is also important to emphasize that over the past decade JNF Canada has attempted to engage without success with the CRA in the hope of finding a mutually acceptable path forward. Approximately two weeks ago, JNF Canada made a settlement offer in advance of this hearing, which was rejected without a counteroffer or any type of dialogue. We urge the CRA, under the leadership of the newly appointed Honourable Wayne Long Secretary of State, Canada Revenue Agency and Financial Institutions, to engage with us in the hope of our arriving at a mutually satisfactory agreement.
“In looking ahead, JNF Canada will continue to challenge the CRA’s revocation of JNF’s charitable status and its decision to publish notice of the revocation when it did in 2024. We have a multi-pronged strategy in place which will ensure that all reasonable legal processes are engaged to protect JNF Canada’s rights.
“While the court ruling was surprising and disappointing, please rest assured that we remain committed to helping address the needs of Israelis during these troubling times and to pursuing justice through the judicial process.”
Davis added this, in his June 6 email to me:
“While we are disappointed with the outcome of our appeal, it is important to clarify that our main/underlying appeal is still in the court system at the Federal Court of Appeal. While we do not have a set date yet, we are expecting our case to be heard in late 2025 or early 2026.”
What has the impact of the CRA decision been on JNF Canada the past 10 months?
So, how have JNF Canada’s operations been affected since that August 2024 decision by the CRA to revoke its charitable status?
Davis wrote, in his email to
“JNF Canada has certainly experienced difficulties since we were revoked on August 10, 2024. It is evident that our revenue has diminished. For example, major gifts from charitable foundations cannot be donated to JNF Canada as these gifts can only be sent to a registered charity. However, we are pleased to share that thousands of Canadians from coast to coast have made contributions to JNF Canada without a charitable receipt. They believe in our mission and mandate so much that they forgo the benefits of a charitable receipt. To us, this demonstrates strong support from our community, and we are as motivated as ever to find a resolution.
“In the meantime, JNF is continuing to proudly operate as a non-profit and support the projects and programs we know are of deep importance to our community here in Canada. Thankfully, we have collaborated with like-minded charities. We are pleased to support three critical projects right now: the rehabilitation of Canada Park’s forests, the Ashdod Rehabilitation & Therapy Centre and the Sderot Resilience Centre. “
Manitoba/Saskatchewan division of JNF Canada carrying on
We also contacted David Greaves, Executive Director, JNF Canada, Manitoba/Saskatchewan, to ask him what impact the CRA August 2024 ruling has had on the Winnipeg office?
Greaves was upbeat in his response. He noted, for instance, that rather than laying off employees in the Winnipeg office, the number of positions there had increased from 3 1/2 to 4.
As well, Greaves observed that the Manitoba/Saskatchewan division was coming off a very successful Negev Gala – despite not being able to issue tax receipts for attendees at the Gala or donors who did not attend the Gala but still wanted to support JNF Canada, and that the office here was already planning next year’s Gala.
Finally, Greaves explained that JNF Canada was now working with a charitable organization called the Israel Magen Fund (which is also known as “Zaka”) to continue working on two projects that JNF Canada had already initiated within the past couple of years and had not been completed: the Ashdod Rehabilitation Centre and the Sderot Rehabilitation Centre.
Greaves advised that anyone wanting to donate to either of those two projects contact the Israel Magen Fund of Canada.
Local News
Simkin Stroll founder Bill Brownstone honoured prior to this year’s stroll
By BERNIE BELLAN (Photos courtesy of Keith Levit) On Thursday, June 12, the Simkin Centre held its 13th annual Simkin Stroll.
Over the years the Simkin Stroll has grown into a huge event incorporating entertainment, food, children’s activities, a silent auction and, of course, the actual stroll itself, which sees residents accompanied by friends, family members, or Simkin Centre staff members walking – or being pushed in wheelchairs around the beautiful LInden Ridge neighbourhood.
This year marked a special occasion as the individual, Bill Brownstone, who actually came up with the idea for the Simkin Stroll, was honoured in a ceremony held in the adult day program lounge prior to the stroll.
In the past, Brownstone has served on the Simkin Centre board, also as interim Chair for a time.
We were able to catch up with Brownstone before he was honoured to ask him how he came up with the idea for the stroll.
“I came up with the idea (in 2011) because I had friends at the Baycrest in Toronto,” he said. “They had what they called the ‘board walk’ where members of the board would walk to raise money. And when they raise money in Toronto – they raise money!
“So the first year (which would have been 2012) I came up with the idea for people walking. That first year we had about four people walking.
“The next year I came up with the idea for the ‘Simkin Stroll’ – and boom, we had walkers and it began to take off.
I said that I remembered Murray Gilfix was always manning a barbeque in those early years.
“There was no barbeque that first year” of the Simkin Stroll, Bill clarified. The barbeque came later. The past couple of years the barbeque has been replaced by volunteers and Simkin staff serving food indoors as the number of people attending would have led poor Murray to be overwhelmed for sure.
At the ceremony in which Bill Brownstone was honoured with what Rabbi Matthew Leibl said was the Simkin Centre’s inaugural “community leadership honour,” Rabbi Leibl paid tribute to Bill Brownstone’s ongoing dedication to the Simkin Centre. “What began as his vision to raise vital community funds has blossomed over the past 13 years to become a joyful, vibrant, and popular event,” Rabbi Leibl said.
“This event connects residents, family, staff, and the broader community in support of a place we all hold dear. Bill’s contributions have enriched the lives of so many and his legacy of compassion and community spirit is deeply felt. As such, it is only fitting that he is the first recipient of our first community leadership honour.”
Rabbi Leibl also acknowledged Bill’s wife Fay, and his children, Rob, Gary, Lisa, and Andrea.
“The Brownstone children in particular have each contributed generously and creatively this year in honour of their dad,” Rabbi Leibl noted.
This year’s Simkin Stroll ended up setting a new record for fundraising with over $100,000 raised – both through donations and the silent auction. Thanks were also issued to two major sponsors of the event: The Asper Foundation and Ellery Broder.
Funds raised will go to support recreation and quality-of-life programming.
Past Chairs of the Simkin Centre Board
(Sitting:) Bill Brownstone & Gordon Pullan
Standing (l-r): Jonathan Kroft, Ted Lyons, Saul Greenbeg, Selma Gilfix, Avrum Senensky, Gerry Kaplan, Al Benarroch
Local News
Shaarey Zedek Sisterhood 60th anniversary interfaith luncheon
By MYRON LOVE On Wednesday, May 28, the Shaarey Zedek Sisterhood hosted its 60th annual interfaith luncheon – with 170 supporters on hand to break bread together, celebrate the Sisterhood’s 95th year in operation – in addition to the luncheon’s diamond anniversary, and enjoy an inspiring presentation by Indigenous business leader and consultant Lisa Lewis, who spoke about the kinship between her people and ours.
The program began with greetings from Lieutenant-Governor Anita Neville and Gail Asper, representing the Shaarey Zedek’s Board of Directors. Asper – the consummate community volunteer – spoke of the importance and benefits of the satisfaction gained from being a volunteer, as well as the important role that the Sisterhood has played in the life of our Jewish community’s oldest and largest congregation – a subject that was subsequently expanded upon by Marisa Hochman – one of the Sisterhood’s three co-presidents (along with Sandy Polanski and Louise Raber).
(Hochman and Raber also co–chaired the luncheon, along with Amy Karlinsky.)
“Our tradition teaches that it is important for us to be part of a community,” Hochman noted in her remarks. “Our Torah teaches that, while G-d is one, it is not good for man to be alone.”
She emphasized the importance in Judaism of balance and harmony as reflected in our rituals and observances – lighting two Shabbat candles, for example, the Commandments being written on two tablets, and in bringing together the four species of plants for the celebration of Sukkot.
“The mitzvah (of the four species),” Hochmanpointed out, ‘is not complete until all four of the elements are brought together – symbolizing that it takes many kinds of people to make a world – and that each of us brings something special to the table. It is only when all of us are working together that we are complete.”
Hochman provided a sampling of some of the ways that the Sisterhood contributes to its members, the synagogue and the wider community: the book club, the tallit-weaving program, monetary donations to the synagogue, support for theological seminaries and other Jewish educational institutions, and Jewish Child and Family Service.
“To me,” she added, “Sisterhood is friendship, community, the power of women working together to create, build and share and the passing on of wisdom and traditions – L’dor V’dor – from generation to generation.
“It is multigenerational, with members ranging in age from 16 into their 90s. A common thread that binds our members is that no matter their age or life circumstances, they are vibrant and engaged with the world around them. They love to learn and help others. They each contain a spark that illuminates.
“Like the glow of the Shabbat candles, we know that, together, we can bring more light and goodness into the world. Together, we definitely shine brighter than we do on our own.”
Following a delicious Shaarey Zedek lunch – salad, party sandwiches and dessert, keynote speaker Lisa Lewis stepped up the microphone. The speaker is a successful business woman, having started “Beyond Excellence Creative Consulting,” which provides tailor-made training and management assistance to a wide range of organizations.