“I’m neither as strong or as courageous as our son Stevie was,” says Rowena Schwartzberg, in an Instagram video launching the Edmonton family’s box jump challenge in memory of her late son.
She was speaking about Stevie Schwartzberg, 35, who died in Edmonton in 2017, after living with a rare genetic disease known as Familial Dysautonomia. There are fewer than 400 patients in the world living with the disease, which strikes mainly Ashkenazi Jews, according to Daryl Schwartzberg, his younger sister who lives in Toronto. Of these, about a dozen FD patients live in Canada.
“FD affects the autonomic nervous system and progresses with age. Many patients do not survive to see adulthood,” said Daryl in an email to The CJN. “Many patients struggle with the daily thoughts of physical deterioration, the loss of other friends with FD, as well as their own mortality.”
After her brother’s death, Daryl and her parents, Jack and Rowena Schwartzberg, created a mental health counselling program for FD patients at the Dysautonomia Center of NYU Langone hospital in New York City. Now, during COVID, the counselling is still continuing virtually.
While he was alive, Daryl said, her brother Stevie would keep fit by working out with a personal trainer, and doing box jumps.
“Stevie didn’t post much on social media but took great pride in sharing his standing box jumps,” Daryl explained, adding that this is what inspired the family’s Box Jump Challenge.
The Schwartzbergs hope the fundraiser will help raise $50,000, which will go through the Montreal branch of the FD, and CanadaHelps.org.
Here is how to do the challenge: film yourself before you jump onto a box or raised surface, nominate three other people to do it, then jump. Afterwards, post the video to social media, with the right hashtags.
“I’m here to jump for FD to raise funds for the mental health program we established in Stevie’s memory,” his mother explains in her video before she carries out her modest jump. “I’m also demonstrating that no jump is too small.”
So far, the challenge has attracted some attention from Canadian media outlets and even from Canadian actor and celebrity Dean McDermott, who did his own box jump. McDermott and his wife, actor Tori Spelling, starred in their own reality TV series. The video challenges other Canadian sports figures including Elvis Stojko and former NHL star Doug Gilmour.