health

Catch cancer before it starts

Today’s ancestry services, like 23andMe, have made us more aware than ever of our genes and just how important they are, for both our own health and the health of our children. Celebrities like Angelina Jolie and Matthew Knowles (Beyoncé’s father) have highlighted the importance of two genes specifically – the BRCA genes – and their role in the development of hereditary breast and ovarian cancers. Even so, with the risk of carrying these genes in the general population only estimated between 1/400 and 1/1,000, for most of us, these genes seem like someone else’s problem. But, a few years ago, I learned that people of certain backgrounds, specifically those with Ashkenazi Jewish heritage, are actually at 10 times the risk of the general population (one in 40) for carrying these BRCA genes. I then learned that I was BRCA1 positive. I am an Ashkenazi Jewish woman.

In the 1970s, my paternal grandmother, then a young woman, was treated for breast cancer and made a full recovery. She passed away in 2014. When she died, I requested to be tested for BRCA through the B.C. Cancer Agency’s Hereditary Cancer Program. At the time, I was not prioritized for the test because no one in my immediate family had had a cancer that would directly link me to the gene. I was not seen at the time as being “high enough” risk.

But, in December 2017, I received a phone call that changed everything. It was from my older sister. She had recently volunteered to join something called the Screen Project study at Women’s College Hospital in Toronto, which included testing for the BRCA gene mutations. She had received her results and had tested positive for the BRCA1 gene mutation. I immediately registered for my own test. The test eventually came in the mail, I spit in the cup and sent it back. A month later, I received my own call from the study.

I was told that I was also positive for the BRCA1 gene mutation and that my chances of getting breast cancer and/or ovarian cancer were extremely high – about 70% lifetime risk. I was told that I would need to make some urgent decisions about having more children because regular screenings and preventable surgeries were now available to me. It was recommended that I take action immediately because of my age. The study connected me back to the B.C. Cancer Agency’s Hereditary Cancer Program, which would connect me with my medical care team.

The next year would prove to be a whirlwind for our family. Within a month, I was pregnant with my third child. I planned to have a surgery to remove my ovaries and fallopian tubes (a salpingo-oophorectomy) the following year. While all of this was taking place, my sister had gone for her first mammogram. It initially was clear, but more intensive screening (available in priority to BRCA carriers) revealed cancer. I then had to witness my beautiful older sister battle breast cancer and go through a full double mastectomy. She luckily made a full recovery. We then celebrated the end of her battle with the birth of my own child, followed soon after by my own salpingo-oophorectomy, the day before my sister’s reconstructive surgery.

As devastating as those phone calls were, one thing is clear to me – that my sister is now cancer-free and alive because she learned she was BRCA1 positive. I also know that my own BRCA status has afforded me the ability to make life decisions, have preventive surgeries and avoid cancer now and in the future. Although scary to consider, the knowledge of the BRCA1 gene in our family has been invaluable and saved lives.

I now volunteer for a committee in British Columbia called BRCAinBC, which is working to improve awareness of and access to testing for the BRCA genes in people of Ashkenazi Jewish heritage in the province. It is our message that all people with Jewish heritage should consider getting tested for BRCA genes, as new studies show that only half of all Ashkenazi Jewish carriers have the requisite history of cancer in the family that would indicate risk for carrying a BRCA gene.

We also let people know that the best time to get tested is when they are young and healthy – before cancer strikes! Testing for BRCA in your 20s and 30s provides people with many more options to prevent and manage their risk of cancer. Testing is quick, simple, easy and cheap (or free in many cases).

It is just as important for men to get tested as it is for women – BRCA genes are better known for their role in breast and ovarian cancers, but they also significantly increase the risk of many other cancers that affect men, including aggressive prostate cancers, pancreatic cancers and melanoma.

Learning your BRCA status can, of course, be overwhelming, but it also can provide you and your family with the tools to stop cancer before it starts. That’s what it did for me.

Tovah Carr is a member of the BRCAinBC committee in British Columbia. BRCAinBC is an initiative to increase awareness and understanding of genetic cancer risk in the Jewish community and provide support for those who want to get tested and for people found to carry the BRCA genes. For more information, visit brcainbc.ca. For more information on the Screen Project, go to thescreenproject.ca.

קוביד, ההורים נפטרו, מזג אוויר משוגע ומלחמה באוקראינה

בשנתיים האחרונות חוויתי אירועים קשים שכמעטו ולא היו כדוגמתם לאורך כשנות חיי, בישראלועתה בקנדה. כשאני חושב על מה שעבר עלי מאז חודש מרץ לפני שנתיים בדיוק, זה נראה לי הזוי- ממש מדע בדיוני

קודם כל החלה אז במרץ אלפיים ועשרים מגפת הקורונה לצבור תאוצה בכל העולם. תחילה שמענועל כך בסין ולא חשבנו כי המגפה יכולה להתפשט גם למערב ובעצם לכל העולם. אני זוכר היטב אתהנסיעה שלי לישראל לבקר את הורי בתל אביב, בסוף מרץ לפני שנתיים. מצד אחד הם רצו לראותאותי מצד שני חששו שמה אדביק אותם בקוביד, כיוון שטסתי מונקובר, עצרתי למספר ימים בברליןוהמשכתי משם לתל אביב

מאוד שמחתי שהצלחתי לראות את ההורים וכרגיל לשון אצלם בבית. לא שיערתי אז שזו שתהיהבעצם, הפעם האחרונה שאראה אותם פיזית. אבי כבר דעך מכל הבחינות, התקשה ללכת ואףהזיכרון שלו כבר לא היה טוב. לאחר זמן מה הבנו שהוא לקה בדמנציה

באותו שבוע קצר בתל אביב נפגשתי עם מספר חברים טובים עמם אני שומר על קשר שנים רבות, למרות שאני גר בוונקובר כבר שנים רבות. כן הספקתי באותם ימים בתל אביב אף להצביע בבחירותהכלליות בישראל, תוך תקווה להחליף את ראש הממשלה הנצחי של ישראל, בנימין נתניהו. זה לאקרה אז אלא רק לאחר כשנה

הביקור בישראל ישאר בזכרוני לזמן ארוך כי כאמור זו הפעם האחרונה שבה ראיתי את הורי

אני חזרתי לוונקובר בדיוק שבוע לפני שהשמיים נסגרו והופסקו הטיסות למספר חודשים. המגפההחריפה והחיים שלנו השתנו מקצה אל קצה. מי היה מאמין שתופעה מוזרה ולא מוכרת זו תימשךשנתיים תמימות. כל שגרת החיים השתנתה, הפסקנו לצאת למקומות ולצרוך תרבות, נצמדנולטלוויזיה, רכשנו מסכות, חומרי חיטוי לידיים ועוד מוצרים התקפים לעיתות של מגפות

עסקים רבים נפגעו קשות מהמגפה בהם מקום העבודה שלי – חברה המספקת הלוואות למי שלאיכול להשיג אותן באחד הבנקים המסחריים, בשל קרדיט גרוע. בזמן החופשי שנותר בידי והוא היהבשפע התחלתי לצעוד מדי יום שעות ארוכות ברחבי העיר ונקובר והסביבה. מכוני הכושר היוסגורים ולכן החלטתי שאני חייב להיות פעיל כדי לשמור על כושר סביר, וההליכות עשו את שלהן

בתחילה ראיתי איך ונקובר הפכה לעיר מתה, ולאט לאט לקראת הקיץ היא החלה קצת להתעורר, אם כי לא באופן שאני רגילים לו. למזלנו מחוץ בריטיש קולומביה נפגע פחות מהמגפה לעומתאזורים אחרים בקנדה, כך שהצלחנו לשמור על חיים שפויים פחות או יותר

בגלל המצב הקשה של החברה באני אני עובד נאלצנו לפנות לבית המשפט לקראת סוף שנתאלפיים, ולבקש הגנה מפני נושים. אני נרתמתי לעזור להנהלת החברה ושוחחתי ארוכות עם בעליאגרות החוב שלנו, כדי לעודד אותם לחתום על הסכם חדש, שיאפשר את המשך קיום החברה. אכןזה קרה ויצאנו לדרך חדשה, באישור בית המשפט, חברה רזה יותר, עם הרחבה פחות חובותועובדים, ועתיד שנראה טוב יותר

במקביל לקראת סוף אלפיים ועשרים מצבו הבריאותי של אבי הידרדר מיום ליום וחששנו ממהשעתיד לקרות. הוא נפל כל הזמן, הפסיק לקחת כדורים, זכרונו בגד בו, ומצבו החמיר. במהלךחודש בפרואר אלפיים עשרים ואחד הוא נאלץ להתאשפז בבית החולים איכילוב הסמך לביתו. שדםלצערנו נדבק גם בקוביד וידענו שהסיום מתקרב. הוא החזיק מעמד כשבועיים עד שנכנע למגפההקשה הזו. בגיל תשעים וארבעה חודשים הוא נפטר

אני לא הצלחתי להגיע להלוויה בגלל מגבלות הקוביד וראיתי את האירוע הקשה הזה באמצעות זום. לא היה זה פשוט לראות איך קוברים את אבא שלי כל כך מרחוק, באמצעות מסך המחשב

הורי היו נשואים שבעים ואחת שנים והיה מאוד קשה לאמא להתרגל לכך שאבא כבר לא איתנו. למרות החשש הכבד של אחי ושלי, אמא לאט לאט חזרה לעצמה ופיתחה לעצמה שגרת חייםחדשה ללא אבא. כנראה שהרצון האדיר שלה לחיות הוא שהוביל אותה. אמא למרות שמלאו להתשעים ושתיים המשיכה להיות מאוד פעילה מבחינה ספורטיבית, חברתית ותרבותית. האופיהאופטימי שלה עזר לה רבות, להמשיך ולחיות לבד. היא הצליחה לקבל עובדת זרה פיליפיניתשתעזור לה בעבודות הבית, וכדי שלא תרגיש בודדת בלילות. ניהלתי לא מעט שיחות טלפון עםאמא ושמחתי שהיא חוזרת לעצמה, צוחקת, נפגשת עם החברות שלה ועם בני המשפחה השונים. היא בחרה בחיים והחיים והכל נראה מתנהל כשורה

כאן בוונקובר עברנו אשתקד את הקיץ החם ביותר בתולדות בריטיש קולומביה ובעצם בקנדה. החוםהיה בלתי נסבל ולצערנו מאות קשישים וחולים נפטרו. אני לשמחתי יש לי מזגן בבית כך שיכולתילהמשיך בשגרת החיים הרגילה ולעבוד כרגיל. רק בערבים הייתי מוציא את האף החוצה

במהלך חודש נובמבר אשתקד חטפנו כאן מכה נוספת ממזג האוויר: כמות אדירה של שטפונותשגרמו נזק אדיר למחוז, הנאמד בכארבעה מיליארד דולר. כבישים, גשרים, בתים ותשתיות רבותנעקרו ממקום כמו אבנים של דומינו שנופלות אחת אחרי השנייה

אני נערכתי לנסיעה לישראל לבקר את אמי בסוף חודש נובמבר. בגלל תקנות הקוביד הקשות בכלמדינה, הכנתי מסמכים רבים, הצלחתי לקבל את החיסון השלישי של פייזר לפני הזמן ונרשמתילבצע בדיקות קוביד בוונקובר ובתל אביב. שבוע לפני הנסיעה נדהמתי לדעת שווריאנט חדש שלהקוביד – אומיקרון משתלט על העולם. אמי התקשרה אלי בבהלה והציעה לי לבטל את הנסיעה. ואכן זה מה עשיתי כי ידעתי שאחרת אאלץ לשהות בבידוד בחלק גדול של הנסיעה. זה היה מאודמעציב שאינני יכול לטוס ולבקר את אמא שהתאלמנה כתשעה חודשים קודם לכן

בינתיים החורף הגיע גם הגיע לוונקובר ולשם שינוי גם הוא היה קשה ביותר. לא זכור לי כבר הרבהשנים קור נוראי כזה ושלג ללא הפסקה

ואז נחתה עלי מכה נוראית נוספת: בראשית חודש פברואר אחי התקשר אלי בדחיפות והודיע לי כיאמא אושפזה בבית החולים ומצבה חמור ביותר. היא נחנקה מחתיחת תפוח בסלט שאותו היאאכלה. במשך עשרים דקות שהתהה ללא חמצן, כך שהבנו שנגרם למוחה נזק אדיר שאין לא תקנה

יצאתי בטיסת חירום לישראל והספקתי לראות את אמא מחוברת לכל הצינורות שבעולם באיכילוב. למחרת הגעתי לבית החולים מוקדם בבוקר ונתבשר לי שהיא נפטרה. אני זה שנאלצי לבשר לאחילשאר בני המשפחה על מותה של אמא. היה קשה להשתתף בהלוויה ולאחר מכן לשבת שבעהולקבל ניחומים, מבני משפחה, חברים וידידים רבים

אמא ואבא נקברו באותו יום בדיוק הפרש של שנה. בקיצור: איבדתי את הורי בתוך שנה תמימהאחד

לא הספקתי להתאושש ממותה של אמא ואז נחתה על כולנו מכה קשה חדשה: ולדימיר פוטיןהחליט שהוא רוצה לעצמו את אוקראינה ופתח במלחמה נוראית ומיותרת

אני מקווה שאחרי שנתיים הזויות אלה אוכל קצת לזכות בשקט ובשלווה וללא שום אירועים חריגים. זה כבר הספיק לי

Talking neurodiversity

A Feb. 28 webinar explored the topic of neurodiversity, a term that encompasses a wide range of conditions, including autism, ADHD, dyslexia and Tourette Syndrome.

The talk, organized by PJ Library, Jewish National Fund of Canada Pacific Region, the Jewish Federation of Greater Vancouver, the Jewish Community Centre of Greater Vancouver and JCC inclusion services, was part of this year’s recognition of Jewish Disability Awareness and Inclusion Month (JDAIM).

“So often there is a grand stigma that a child has to fit the mold of what society wants of them. Our differences are what make us so valuable and so integral to creating positive change. I am thankful for my differences,” said Margaux Wosk, an autistic artist and entrepreneur, who provided introductory remarks.

The panelists for the evening were Dr. Janet Mah, a registered psychologist; Suzanne Ferera, a family counselor and registered occupational therapist; and Michele Shilvock, a certified behaviour analyst. Lisa Romalis, a teacher who is also a parent of a neurodiverse child, was the moderator.

Mah began by discussing common misconceptions regarding ADHD, or attentive deficit hyperactivity disorder. ADHD, she noted, is the broad term applied to capture three manifestations of the disorder: inattention, impulsivity and hyperactivity. She explained that ADD (attention deficit disorder) is an outdated term that would fall into the ADHD umbrella.

Children with ADHD might not be easy for educators to spot. “Often they are the quiet daydreamers that don’t disrupt the classroom, or the highly intelligent kids who are underachieving in relation to their own potential,” said Mah, an associate at the Cornerstone Child and Family Psychology Clinic, a clinical assistant professor in the faculty of medicine at the University of British Columbia and an expert in behavioural parent training and cognitive behavioural therapy.

Another misconception stems from the word “deficit” in ADHD. Frequently, a child’s attention will show signs of inconsistency, rather than a deficit, she explained. That is, a child with ADHD may be able to focus on subjects that are of interest to them. The difference lies within the executive functions in the brain, i.e., the ability to make transitions to a less-preferred task, time management, peer relationships, flexible thinking and emotional regulation.

There is, as well, a misconception centring around the use of medication, Mah pointed out. Many fear that those who take medication for ADHD will suffer a “zombie effect” or be susceptible to an increased risk of substance use. Proper treatment, she said, helps increase a positive trajectory for a person. Grades and behaviours may improve, bringing about more self-confidence and better friendships.

Mah emphasized the importance of external supports or adjusting the environment for those with ADHD. “ADHD is not a knowledge deficit,” she said. “It is more of a performance deficit. Most kids with ADHD know what the right thing to do is; they just have difficulty doing it in the moment.”

Ferera shared with the audience some of the parenting strategies she employs. A practitioner of the “calmer, easier, happier” method, founded by British learning and behaviour specialist Noël Janis-Norton, Ferera works as a school counselor and goes into family homes to help children who have behavioural difficulties.

One of the strategies Ferera uses with parents and teachers is descriptive praise. Rather than correcting behaviour or using vague or over-the-top praise to bring about improvement, descriptive praise recognizes the positive behaviours of a child, such as honesty, hard work and kindness.

“When we say ‘good job’ to a child, we are not giving them any useful information about what they did right so that they can do it again. Also, words like ‘awesome’ are not particularly believable to a child who knows they haven’t done anything awesome,” she said.

Descriptive praise is more specific. For example, if a child is being cooperative, a parent might say to them, “I asked you to put your toys away and, look, you’re putting your toys away.”

“The reason it is so important is that we all, as human beings, want to be appreciated, so, if we can use descriptive praise, it helps children understand that they can do the right thing and that they can do it again,” said Ferera, who believes this strategy can bring about a positive attachment in the parent-child relationship.

Shilvock, who has worked in the field of autism and neurodiversity for more than 23 years, supporting children and families through direct intervention design, supervision and parent coaching, described her approach as a behaviour analyst as follows: “Good therapy should be reflective about how learners learn. I am not about turning children into anything other than into the amazing individuals they already are.”

She, too, underscored the importance of environment and celebrating the diversity in neurodiverse children. Further, she stressed understanding a child’s social skills by gathering information and knowing where the “landmines” or potential triggers are. For example, if a child is attending a birthday party, a parent should find out what the plan for the party is ahead of time. This way, they can ascertain if there are any potential issues and decide if it is best for their child to go there without them or if they should accompany the child.

In concluding remarks, Michael Sachs, executive director of JNF Pacific Region, thanked the participants and recognized the wide range of topics covered in the webinar, as well as the need for more conversations on the topic in the future.

Sam Margolis has written for the Globe and Mail, the National Post, UPI and MSNBC.

New school lunch pilot

Food insecurity by province or territory, using data from Statistics Canada’s Canadian Community Health Survey, 2017-18. (image from proof.utoronto.ca/food-insecurity)

Jewish Family Services Vancouver (JFS), Richmond Jewish Day School (RJDS) and Kehila Society of Richmond are piloting a new food program to enhance students’ access to healthy and nutritious food in a way that promotes privacy, availability and inclusiveness.

When RJDS needed support with their school lunch program after a contract with a former caterer ended, Kehila Society saw an opportunity to work with JFS and create a food program that benefits all families throughout the week, regardless of income.

With start-up funds provided by Jewish Federation of Greater Vancouver, once a week, JFS delivers hot meals to RJDS at no cost to the students or their families. These meals are healthy, plant-based, and available to all students. In addition, a community fridge and pantry program is in operation throughout the week. The start-up funds provided to the Kehila Society enabled the purchase of a fridge and pantry cupboard, which JFS, the Kehila Society and Richmond Food Bank keep stocked. Students and their families can access healthy snacks, dry goods, fresh produce and meals during school hours.

“The students at Richmond Jewish Day School have absolutely loved the weekly hot lunches sponsored through JFS and the Kehila Society,” said Sabrina Bhojani, principal of RJDS. “Our parents have also expressed their delight with this program, knowing that their children are receiving a warm, healthy and nutritious meal at school. The research is clear – good nutrition helps our children to focus, concentrate and self-regulate, which, in turn, results in improved learning and student performance.”

Proper nutrition plays a central part in learning, yet one in eight households in Canada struggle to access nutritious food, according to PROOF, a research program investigating household food insecurity – defined as “the inadequate or insecure access to food due to financial constraints” – across the country (proof.utoronto.ca). That amounts to “4.4 million people, including more than 1.2 million children living in food-insecure households.”

Healthy, universal school meal programs play an important role in giving children and families access to nutritious and safe food in a non-stigmatizing manner when they need the support.

“School meal programs can play a crucial role in ensuring that all children … can eat healthy and nutritious foods – which, in turn, supports their ability to learn,” said Lynne Fader, co-director of the Kehila Society. “School meal programs are uniquely placed to address under-nutrition, by promoting healthy diets. Serving a free school meal increases children’s intake of healthy foods, especially among children with lower socioeconomic status.”

“All students deserve access to healthy, safe, nutritious and easily accessible food,” said Ilana Labow, director of food security, JFS Vancouver. “We are inspired by this vision and are committed to helping uplift students’ lives through delicious, good food. We look forward to nourishing this program together and watching it thrive and grow.”

– Courtesy JFS Vancouver

Accessibility seems improved

(image from flickr / Province of British Columbia)

Last November, the American advocacy organization Respect Ability announced some good news. New research it had conducted in 2021 suggested that disability awareness and inclusion was improving in Jewish communities across North America and Israel. According to its most recent survey, more synagogues, Jewish community centres, schools and private institutions are designing programs that consider the needs of people with disabilities. And more individuals are able to find Jewish organizations that support individuals with invisible disabilities like autism and attention-deficit/hyperactivity disorders.

Respect Ability’s goal for the survey was to determine the health of disability rights in diverse Jewish communities, particularly in countries where there were laws against employment and housing discrimination. Its last survey had been in 2018, and researchers wanted to know whether accessibility and acceptance had improved in the past three years.

There were just over 2,000 respondents in total, primarily from Canada, the United States and Israel. The overall message was that inclusion and accommodation was expanding. Accessibility for wheelchairs and improved opportunities for individuals with sight or hearing challenges were on the rise, as were outreach efforts for individuals with disabilities in general.

What is more, the number of faith organizations hiring rabbis and staff who had disabilities and, therefore, understood firsthand the challenges of a physical or cognitive disability, had increased by more than 73%. More than half (57%) of the survey-takers also said that the organizations had made public commitments to support diversity.

But the survey also identified a key obstacle: many community leaders wanted to help expand opportunities for inclusion, but “didn’t know how.” Roughly one-fifth of all respondents said that expanding opportunities in their faith communities was limited by leaders’ lack of knowledge or experience in making settings more accessible. This meant, in some cases, that members with invisible disabilities like autism or ADHD didn’t have access to resources or were turned away from programs and activities.

Most of the responses to the survey came from Respect Ability’s home base: U.S. states like California and New York, where laws and advocacy initiatives are different from those in Canada. Only about 7% of the responses came from Canada, where disability rights are protected by the federal Charter of Rights and Freedoms. The survey also did not reveal how much, or if any, of the Canadian data came from the Vancouver area. So, are the survey’s findings reflective of diversity inclusion here?

The last three years have been challenging for many, but particularly for organizations that rely on in-person community participation. The 2020 shutdown of schools, synagogues and community centres due to COVID forced many organizations in the Vancouver area to suspend programs that offered disability-inclusive services. Still, the Jewish Independent found that a number of organizations were able to develop creative ways to maintain their inclusive classes and programs.

Trying to inspire inclusion

In 2018, the Jewish Federation of Greater Vancouver launched its Inspiring Inclusion grant program to assist community organizations in designing or improving inclusive programs. The grant competition was created as part of its 2020 Strategic Priorities, and it offered up to $2,500 to organizations that developed a new program or idea that would expand disability inclusion.

Four one-year grants, which were awarded in 2020, went to Vancouver and Richmond applicants. Each offered a unique way for engagement, ranging from new educational strategies that catered to individual learning approaches to special equipment that helped expand creative participation in the classroom.

The Jewish Community Centre of Greater Vancouver’s Family Yoga Fundamentals program was designed to appeal to a variety of abilities and offered options for in-person family participation. It later gave rise to a virtual format that attendees could link up with from home. According to the JCC’s adult programs coordinator, Lisa Cohen Quay, Family Yoga Fundamentals integrates adaptable exercises that are non-stigmatizing and fit a variety of abilities. Quay said the program has also been shown to help with pandemic stress and loneliness.

Richmond Jewish Day School turned to music as a way to inspire inclusion. According to principal Sabrina Bhojani, the grant provided funding for specially adapted Orff percussion instruments, or xylophones that could be used by students with special needs. “Music education is an integral component of both our B.C. and Hebrew curriculum at RJDS,” Bhojani said. “Weaving music into [the] curriculum is a meaningful way to help our students develop their Jewish identity and better understand their culture.”

Congregation Beth Tikvah used the funding to help develop Kavod. According to Rabbi Susan Tendler, the program aims to ensure that the synagogue’s services and activities are open to everyone, “regardless of personal physical, financial, or accessibility limitations.” Kavod’s development is ongoing.

Congregation Beth Israel received a grant to create new Hebrew school programming. Beth Israel’s director of youth engagement, Rabbi David Bluman, said the funding helped make the Hebrew reading program more inclusive to children with learning challenges. “We always strive to be [as inclusive] as we can,” he said, adding that many of Beth Israel’s youth programs are adaptable to students’ abilities, such as the use of “shadow” companions who function as a “big brother or big sister” for a child during activities and lessons. The shadow program can be used for age levels. “We want our teens to be as independent as possible,” Bluman said.

B’nai mitzvah programs

Both Beth Israel and Temple Sholom tailor their b’nai mitzvah programs to meet the specific abilities of the child. Temple Sholom School’s principal, Jen Jaffe, said about 10% of the student body have varying needs.

“All b’nai mitzvah-aged children are given the opportunity to have a b’nai mitzvah, and the clergy works with each family to make sure expectations and goals are feasible and met. Each child is given the chance to shine regardless of any disabilities,” Jaffe said. The school also trains madrachim, or helper students, to support students with invisible disabilities.

Beth Israel is also known for its inclusive b’nai mitzvah program, which is led by ba’allat tefilla Debby Fenson. She said the program is designed to ensure that a child, irrespective of ability, can participate in the service: “I think that the expectation is that every child should be called up to [the bimah]. It’s not about how well they read the Torah, it’s about welcoming them into the community.”

Fenson said the community has celebrated more than one b’nai mitzvah in which a child’s medical challenges needed to be considered. In one case, the child, who was nonverbal, was aided by his mother in saying the Shema. “There was clear understanding on his part,” Fenson said. “His mother helped him in forming the words and saying along with him. He was welcomed into the community.”

Leadership by inclusion

Respect Ability’s survey of North American and Israeli Jewish communities highlighted two factors that are often important to creating inclusiveness: the top-down commitment to diversity and a leader’s personal experience. All of the above synagogues, schools and community services – as well as others – benefit from clear initiatives that attract families with accessibility needs and see inclusion as an expanding mission. In some cases, they also benefit from leadership that is open about their own health challenges as well.

Beth Israel Rabbi Jonathan Infeld said he is aware that his willingness to talk openly about his own challenges can help create a supportive environment for others. Infeld was born with a congenital heart defect.

“Unfortunately, I have firsthand experience with health issues that I am happy to share with people about, certainly because I want to be transparent about who I am as a human being…. I would hope, had I been born with a whole heart and not a hole in it, that I would still have a whole heart,” he said, noting that when we’re forced to reflect on our own abilities and limitations, it can inspire empathy for others faced with similar challenges.

One area that was not addressed in the survey was accessible housing, which helps expand disability inclusion. Tikva Housing Society’s very first housing project in 2008 contained accessible units. The organization’s third inclusive property, Dogwood Gardens, opens this year in the West End. This will be the subject of a future story in the Jewish Independent.

Jan Lee is an award-winning editorial writer whose articles and op-eds have been published in B’nai B’rith Magazine, Voices of Conservative and Masorti Judaism and Baltimore Jewish Times, as well as a number of business, environmental and travel publications. Her blog can be found at multiculturaljew.polestarpassages.com.

Care for the caregiver

On Feb. 14, Jewish Seniors Alliance presented the third of its 2021/22 Empowerment Series. The event – Care for the Caregiver – was co-sponsored with L’Chaim Adult Day Centre and the Council of Senior Citizens’ Organizations of British Columbia, and the program was presented by Royce Shook of COSCO’s Health and Wellness Institute and Leah Deslauriers, administrator of L’Chaim.

Gyda Chud, co-president of JSA welcomed everyone and thanked the agency’s partners for participating.

Barb Mikulec, vice-president of COSCO, explained that COSCO is a nonprofit group for seniors helping seniors and that its Health and Wellness Institute presents many free workshops on seniors issues. She introduced Shook, who has been in the field of education for more than 40 years and has worked in curriculum studies. He advises or serves on various seniors committees/councils.

Shook spoke about the stress and burnout experienced by caregivers. In Canada, he said, there are approximately five million unpaid caregivers supporting family members; an economic value of $6 billion to $9 billion.

Caregivers provide both physical and emotional support, he said. This role could involve home management, such as bill paying, grocery shopping, driving to appointments, cooking and cleaning. For the caregivers, they may benefit from a sense of personal satisfaction and a sense of purpose. They learn more about their inner strength and gain a purpose in life by the act of helping. They can help pull family and friends together, but there will be changes in family dynamics and relationships. At times, the recipients of care may be resentful at their loss of independence and privacy.

There is an emotional impact on the caregiver in that they may worry about not being strong enough to carry the load. At the same time, they may avoid asking for help, and this could lead to burnout, Shook warned. There are a number of warning signs to watch for, such as a loss of energy, the neglect of personal needs, trouble relaxing, irritability with the senior and isolation. To avoid burnout, he advised caregivers to learn about the disease or condition plaguing the senior and take any help that is offered for that condition. Know your limits and specify them to others, i.e. family and friends, sharing the burden with them. Make sure to have regular breaks, and talk with others about your feelings.

Communication is very important, he said. Keep up to date on information from the health team. Let the recipient of the care lead, try to be a good listener and maintain eye contact. Always remember that the person has changed, so avoid giving advice or quarreling over minor issues. Do not say, “I know how you are feeling,” but instead say, “How do you feel?” Have a consent form so you can accompany the recipient to the doctor and have questions ready and take notes. There are three major areas of decision-making that need to be arranged with the recipient and not for them, said Shook. These are medical, the need for a representation agreement; legal, power of attorney; and financial, also covered by power of attorney.

Always remember to take care of yourself by accessing, for example, adult day care for respite, home help and community support groups. There is no such thing as a perfect caregiver. Always remember to respond to the present situation and not to the person you once knew. If you don’t care for yourself, you can’t care for others, he said.

After Shook completed his presentation, Eireann O’Dea introduced Deslauriers, who, prior to joining L’Chaim five years ago, was the coordinator of the seniors program at the Jewish Community Centre of Greater Vancouver. She has also been active in seniors housing issues and is a family caregiver for her parents.

L’Chaim is one of 12 adult day centres in the region funded by Vancouver Coastal Health. Referrals are made by a caseworker at the health unit and the programs provide stimulation for the recipients and respite for the caregivers.

At L’Chaim, clients arrive about 10 a.m. and have a light breakfast after which the programs begin. The morning may consist of word games, followed by news and a discussion. A full lunch is served during which socialization is encouraged. The afternoon consists of a guest speaker and/or a musical program. Clients are usually picked up about 3 p.m. Any pertinent information is passed on to the caregivers.

L’Chaim is similar to other centres but it is culturally Jewish. It is funded for 13 clients/day, three days/week and costs $10/day. More information is available at lchaim.ca.

A list of resources for caregivers will be made available on the JSA website, jsalliance.org. Also watch the website for information on the next Empowerment program, April 26, in co-sponsorship with Jewish Family Services, and the Spring Forum on May 15.

Shanie Levin is program coordinator for Jewish Seniors Alliance and on the editorial board of Senior Line magazine.

Turning tragedy to hope

The year 2016 was a milestone for Kalman and Malki Samuels. It marked the inauguration of a dream years in the making – the opening of the Shalva National Centre, one of the largest centres of disability care and inclusion in the world. Built not far from the entrance to Jerusalem, the 12-storey world-class complex features an auditorium, a gymnasium, hydrotherapy and semi-Olympic pools, a virtual reality therapy suite, a research and study institute, a café, some of whose workers have developmental disabilities, and accommodations for 100 respite sleepovers per night.

How was it that Kalman and Malki Samuels came to create this extraordinary organization that assists 2,000 children with disabilities each week, while empowering families and promoting social inclusion? The answer lies in the subtitle of Vancouver native Kalman Samuels’ Dreams Never Dreamed: A Mother’s Promise That Transformed Her Son’s Breakthrough into a Beacon of Hope (Toby Press, 2020) – it was a mother’s promise.

In 1977, the couple’s healthy, lively baby boy, two weeks short of his first birthday, was checked by a doctor at a Jerusalem clinic before receiving his second DTP inoculation; and all his developmental milestones were fine, so the nurse gave him the shot.

But Malki knew the same day that something was wrong. “I took Yossi home and followed the instructions they’d given me at the clinic…. I bathed him, gave him baby paracetamol and let him sleep. The moment he woke, I knew my baby was gone. He looked up at me with shiny eyes as if to say: ‘What have you done to me?’”

Only later did the couple discover that, on that October afternoon, “Israel’s health authorities had already known for almost five months that the vaccine batch they were using … was dangerously flawed.” The defective pertussis (whooping cough) component was from the Connaught Laboratories of Canada. The diphtheria and tetanus components were from the Israeli company Rafa, which had combined the three.

Thus began a saga of almost 40 years of anguish, faith, research, perseverance, legal battles and, ultimately, the realization of dreams, not only for the injured Yossi, but for thousands of other children with disabilities.

Dreams Never Dreamed is written chronologically, beginning with Kalman’s personal story of visiting Israel as a college student in the 1960s, eventually becoming Orthodox, making aliyah and marrying his life partner. He writes his family’s spellbinding story with an honesty and openness that opens and pierces our hearts as well.

Yossi was ultimately diagnosed as legally blind – though he loved to wear glasses because it helped him feel more competent – and legally deaf. He is also severely hyperactive.

The Samuels left their home in Israel for New York, following every medical lead in search of help for their son. While her son was attending the Lighthouse – a famous specialized school for the visually impaired – Malki made a pact with God: “… I promise You this. If You ever decide to help my Yossi, I will dedicate my life helping so many other mothers of children with disabilities whom I know are crying with me for their children.”

Some challenges were especially painful, like when children teased Yossi, or when an important Jerusalem rebbetzin, visiting New York, said to Malki, “It’s not fair to yourselves or your healthy children…. You should consider moving this child out of the house, so you can get on with your lives.” Malki answered her: “You have no faith in God.” She invited the rebbetzin to wait 20 minutes, till Yossi came home from school. She saw a child nicely dressed, with glasses and hearing aids, carefully navigating the steps and hugging and kissing his mother, happy to see her. The rebbetzin cried and asked forgiveness.

A few years later, the couple learned that a lawsuit could only be filed in Israel, since that was where the vaccination had been administered. They found an excellent Israeli lawyer and doctors willing to testify, and the family returned home. Samuels describes the legal battles in excruciating detail. In October 1983, five years after the vaccination and after exhaustive paperwork and research, the couple filed suit against the Canadian Connaught Laboratories, the Israeli Rafa pharmaceutical company, the city of Jerusalem and the State of Israel. (The lawsuit ended in a settlement that, even according to the judge, was less than they deserved, but would save them more years of expensive and aggravating legal action.)

At the age of 8, Yossi experienced a “Helen Keller” moment, when Shoshana Weinstock, a warm and loving teacher who was deaf herself taught him his first word – shulchan (table) – using finger spelling. “All of a sudden, he lit up and he got it,” Kalman is quoted as telling the Jerusalem Post. “She taught him the 22 letters of the Hebrew alphabet. Another speech therapist taught him how to speak Hebrew and, slowly, he began to talk.” After that, Yossi was unstoppable. He learned to type on a Braille typewriter, to pray and to speak to those who were able to understand him.

Spurred on by their son’s breakthrough, in 1988, the couple wrote the first proposal for an outreach program that would help other families with children with disabilities. In 1990, that proposal became Shalva, the Israel Association for the Care and Inclusion of Persons with Disabilities, which began as an afterschool program for six children in the Samuels’ Har Nof apartment. The name Shalva is derived from Psalm 127 and means serenity, but, like any new enterprise, the road to success was challenging. The book is filled with anecdotes about how chance meetings on airplanes, or through conversations with a friend or a neighbour, Kalman reached donors who kept Shalva going and led to its development and expansion.

In addition to giving her life and creativity to making sure the professional programs would be the best they can be, Malki, the powerhouse engine behind Shalva, was involved in every aspect of the design and building of the Shalva National Centre, right down to the tiles. She was determined that it feel like a home, not an institution. Renowned Israeli artist David Gerstein, deeply moved by the Shalva story and appreciating Malki’s vision, created a magnificent 20-foot-high mobile of metallic butterflies that hangs in the Shalva atrium.

Around 2005, a gifted young musician, Shai Ben-Shushan, offered his services to Shalva. He had been a member of the Duvdevan special forces unit in the Israel Defence Forces and suffered severe injuries from a grenade attack while pursuing terrorists. He told Kalman, “Like a baby, I had to learn again to eat and to talk. My life was destroyed … I learned what it was like to be helpless and dependent on others … and I began to think about going back to music and sharing it with others who have similar challenges.”

By the end of a year, Shai had created the now world-renowned Shalva Band, signaling to all that having disabilities does not mean one cannot reach for the stars and make dreams come true.

In 2020, Shalva graduated its first program of young men who entered the IDF as soldiers in the Home Front Command unit. Israel’s Ministry of Foreign Affairs brings heads of state and diplomats to Shalva, just as they take them to Yad Vashem: World Holocaust Centre and to Mount Herzl, the burial place of soldiers who died defending the state of Israel.

Dreams Never Dreamed is alternately inspiriting, infuriating, funny and enlightening, but, for me, Malki’s voice and her photograph are missing. If you want to “meet” her, you can watch a mesmerizing Shalva-produced film on YouTube, About Yossi – A Film About Yossi Samuels.

The Yossi of today is smart, learned, eloquent and brave, with a sharp sense of humour. He can type, read, and daven in Braille, and particularly enjoys high-level Torah literature and magazines. He has traveled the world, met with celebrities and presidents (in Israel and America), is a horseback rider and a certified wine connoisseur. Kalman writes, “[Yossi’s] close friends number in the hundreds and acquaintances in the thousands.”

As his walking ability and balance worsened, Yossi eventually required a wheelchair. “Our blind and deaf son said, ‘For the first time in my life, I feel handicapped,’” writes Kalman. “Yossi had never referred to himself as blind or deaf, but rather ‘low vision’ and ‘hard of hearing.’”

Kalman recalls in the book how his daughter, Nechama, told him that he was like Forrest Gump: “Mommy had her dream and told you, ‘Run, Kalman, run!’ You’ve never stopped; it has coloured your life and all of ours.”

And the lives of thousands more.

Toby Klein Greenwald is an award-winning journalist, the artistic director of Raise Your Spirits Theatre, a poet, a teacher and the editor of wholefamily.com. This review first appeared in the Fall 2021 issue of Jewish Action.

It’s been a hard two years

Last summer, given COVID’s continued presence and restrictions, campers were especially happy to be at camp. (photo from Camp Hatikvah)

Prior to 2020, Camp Hatikvah was experiencing unparalleled success. With enrolment maximized, the organization was in the position to focus not only on capital and program development but also on long-term financial planning. According to Liza Rozen-Delman, the camp’s executive director, Hatikvah’s future had never looked brighter. “It was a period of great excitement for us,” she said. “We honestly thought that nothing could get in the way of our growth and success.”

The pandemic, however, changed everything. “The impact of COVID was immediate and devastating,” Rozen-Delman said. “We went from being on top of the world to worrying about our very survival.”

photo - Boys during a service at Camp Hatikvah — *(photo from Camp Hatikvah)*

Luckily for Hatikvah, donors immediately stepped in to cover the camp’s mounting financial losses. “People knew we were in trouble and they rallied around us,” said Rozen-Delman, with great emotion and gratitude. “Not only did they cover our operational expenses entirely in 2020, they made it possible for us to open in 2021 by funding all of the camp’s COVID-related expenses, like testing, site upgrades and more.”

Rozen-Delman went on to share how incredible it was to welcome campers back to camp last summer. While capacity had to be dramatically reduced to adhere to government group-size limits, close to 400 children participated in Hatikvah’s program in 2021.

“We rearranged our session lengths to make sure that every single Jewish child wishing to attend our camp was able to do so,” explained Rozen-Delman. “While this meant that each camper was at camp for a little less time than is typical, everyone was just so grateful to be there.”

“Our campers are always happy to be at camp but last summer, they were elated,” added Eden Gutterman, the camp’s associate director. “They needed to socialize, to be outdoors and to be away from technology and it was just so beautiful to watch them revel in camp and each other.”

photo - Campers at Camp Hatikva give a thumbs up — *(photo from Camp Hatikvah)*

Gutterman shared her favourite memory from last summer. “One Shabbat, we asked all of the campers who had their bar and bat mitzvah’s over Zoom to stand in the middle of a circle made up of the rest of the campers and counselors. We then did the hora around them as a tribute to their milestone and accomplishment. None of these campers got to celebrate their simchah in person so it was incredibly touching to see them surrounded and celebrated by their friends. It is something we – and they – will never forget.”

photo - Camper jumps into the water — *(photo from Camp Hatikvah)*

Camp Hatikvah is now busy preparing for summer 2022.

“We recognize that COVID will likely not be over by summer,” acknowledged Rozen-Delman. “And, while we wish it wasn’t the case, we feel well-prepared to deal with anything.”

Rozen-Delman shared that the Gutman family and Rockdoc Consulting Inc. have provided the funding for the camp to build a new infirmary in time for this summer.

“Given the realities of the ongoing pandemic, this gift couldn’t have come at a better time,” said Rozen-Delman. “Our new infirmary has been designed with COVID and any future infectious disease in mind and will have recovery rooms that can be used as properly ventilated isolation space if necessary. Its functional space has also been thoughtfully designed to allow us to meet and exceed current best practices in camper care. It is a gift our camp so desperately needed and we couldn’t be more grateful to Sam and Belinda and Gloria and their families for their generosity.”

Joanna Wasel, Camp Hatikvah’s board president, commented that, while she wished the world hadn’t had to experience this pandemic at all, she believes that the camp will ultimately be stronger because of it.

“We are entering 2022 with a renewed sense of purpose,” said Wasel. “Our community supported us through this challenging time because they believe in our mandate to help raise the next generation of strong, confident and resilient Jewish leaders. Their faith means everything to us and we are determined to make them proud.”

– Courtesy Camp Hatikvah

Studying social sense

Michael Gliksberg, left, and Prof. Gil Levkowitz are among the researchers who have discovered that oxytocin in a developing zebrafish brain determines later social behaviour. (photo from Weizmann Institute)

Whenever we decide to throw a party, invite in-laws to dinner or embark on a cruise, we are driven by the most basic component of social behaviour: the desire to hang out with other humans. Considering that the drive to form groups with members of one’s own species has been conserved throughout evolution, it’s evident that social behaviour is governed by genes, at least to some degree. But our parents and teachers help us hone our social graces, so teasing apart the effects of nature and nurture on this behaviour is hard, if not impossible. By studying zebrafish, Weizmann Institute of Science researchers, in collaboration with scientists in Portugal, have managed to solve part of the riddle of how social behaviour is hardwired into the developing brain.

Zebrafish are perfect for studying the inborn basis of behaviour because they receive zero nurturing from parents. “Some fish species take care of their young, but not zebrafish,” explained Prof. Gil Levkowitz of the Weizmann Institute’s molecular cell biology and molecular neuroscience departments, who headed the research team together with Prof. Rui F. Oliveira of Instituto Gulbenkian de Ciência in Portugal. “The female zebrafish spawns several hundred eggs, which are fertilized by sperm released into the water by the male. She does provide her offspring with a ‘lunchbox’ – a protein sac, or yolk, that makes up part of the egg – but, otherwise, her message to her children is: manage on your own.”

At about four weeks of age, the centimetre-long juvenile fish, just out of the larval stage, begin to socialize. Though not as exquisitely synchronized as the schools of moonfish in the movie Finding Nemo, they do exhibit a strong tendency to swim together as a group, termed a shoal. Much like humans, they have an incentive to seek company; in their case, the group provides them with advantages in searching for food, overcoming currents, avoiding predators and finding mates. The shoaling behaviour of zebrafish requires sophisticated processing of visual and social cues, very similar to that which takes place in the brains of socializing humans. In particular, the zebrafish must be able to identify other fish as belonging to their own, “friendly” – as opposed to different or, worse yet, predatory – species.

To learn how the social behaviour of zebrafish develops, the researchers focused on the hormone oxytocin, one of the most important neurochemicals known to enhance social interactions, including bonding. Postdoctoral fellow Dr. Ana Rita Nunes and doctoral student Michael Gliksberg created a system for exploring the effects of oxytocin on the developing brains of zebrafish larvae. They produced transgenic larvae whose oxytocin-making neurons harboured a bacterial gene encoding fatal sensitivity to antibiotics. The researchers could then eliminate these neurons from the brains of the larvae at different stages of their development by adding antibiotics to the water, and they later observed the zebrafish behaviour as they became adults.

The scientists discovered that the larvae whose brains lacked oxytocin early on – specifically, in the first two weeks of life – grew into adult fish with an impaired capacity for social interaction, namely, swimming in a shoal. Although their brains regenerated the oxytocin neurons later in life, this capacity was not restored. This meant that, for adults to be capable of social behaviour, their brains had to be organized by oxytocin in a certain manner during a critical time window of brain development in which the social traits are established.

The researchers further discovered the mechanisms by which oxytocin primes the growing brain for socializing. They showed that oxytocin-producing neurons were critical to the birth of another type of neuron, one that releases the neurotransmitter dopamine, which is known to regulate feelings of reward and motivation. Zebrafish whose brains had not been exposed to oxytocin during the first two weeks of life had reduced numbers of dopamine-making neurons, as well as a reduced number of connections to these neurons, in two distinct brain areas.

One of these areas was responsible for processing visual stimuli, apparently of the kind essential for recognizing potential swimming partners. An analogous area in the brains of mammals, including humans, is involved in processing visual cues in social situations. It controls eye movements that scan, for example, different elements of the face in a particular order to decipher facial expressions. This pattern is often absent in people with autism, suggesting that their brains respond to social-based visual cues differently.

The other dopamine-deficient brain area in the zebrafish was analogous to a major reward centre in the mammalian brain, which is involved in the positive reinforcement of social interactions.

A lack of oxytocin in the critical early developmental period also disrupted a system of neuronal connections known as the social decision-making network – a group of brain areas that work together to process social information. In fish whose brains had developed without oxytocin, the synchronization patterns of neuronal activities among these centres were completely different from those of regular fish.

Nunes summarized: “Oxytocin organizes the developing brain in a way that’s essential for responding to social situations.”

– Courtesy Weizmann Institute

mRNA & cancer drugs

Prof. Etta Livneh (photo by Shay Shmueli/BGU)

Most everyone on the planet has now heard of mRNA, thanks to the vaccines against COVID-19 from Pfizer and Moderna, which are based on messenger RNA. But, before mRNA was used to address COVID, research was conducted into how it could fight cancer. Now, researchers at Ben-Gurion University of the Negev have discovered a key connection between mRNA, peptide proteins and tumour progression.

Messenger RNA codes for different proteins, each with a unique function. There are both “long” and “short” peptides. Until now, scientists were not sure if short peptides had any biological function.

Prof. Etta Livneh of BGU’s Shraga Segal Department of Immunology, Microbiology and Genetics has shown that single short peptides in fact have a very important role – as a kinase inhibitor that can slow tumour growth and invasion, cancer cell survival and metastasis.

Proteins (and protein kinases in particular) propagate signals that carry instructions to the cells and dictate cell fate. There are more than 500 different kinases in the human body.

With cancer, a kinase erroneously tells the cells to divide and reproduce in a rapid and uncontrollable manner. But the flipside is also true: if a kinase can be inhibited, it should block the proliferation of cancer cells.

And that’s “just the tip of the iceberg,” said Livneh, whose discovery has been a decade in the making. “Now that we know that at least some peptides have a biological function, we can begin to discover the roles of many more.”

Kinase inhibitors are already one of the hottest areas of cancer research, in some cases replacing chemotherapy. Livneh’s research will allow scientists to better understand how to control this cancer-fighting technology.

The research was supported by a grant from the Israel Science Foundation and published in PNAS (Proceedings of the National Academy of Sciences of the United States of America).

Israel21c is a nonprofit educational foundation with a mission to focus media and public attention on the 21st-century Israel that exists beyond the conflict. For more, or to donate, visit israel21c.org.