New online challenge aims to raise awareness of rare disease
An Edmonton couple who lost their son to a rare genetic disorder is hoping a new challenge on social media will help raise awareness and money to support people living with the disease.
Jack and Rowena Schwartzberg's son Stevie died from Familial Dysautonomia (FD) four years ago at the age of 35.
Since then, the family has been doing what they can to make sure a mental health support program they say helped Stevie deal with his condition continues.
"It has been an absolute lifeline for patients," Rowena Schwartzberg told CTV News Edmonton.
That's why the Schwartzberg family hopes their box jump challenge goes viral.
The idea is to take a video of yourself performing a box jump and post it to social media with #boxjumpchallenge and #jumpforfd.
The family hopes to raise $50,000 for the same mental health program that helped Stevie.
Lily Armstrong is the program's counsellor. She works with FD patients through the NYU Langone medical center.
Armstrong has been doing her counselling remotely for years, an aspect of her service she says is more relevant amid the COVID-19 pandemic than ever before.
"When you're dealing with chronic illness, and sometimes that comes with chronic pain or chronic prejudice, that having mental health services in that kind of attunement – not only to your physical well-being, but to your emotional well-being - is such a valuable service," Armstrong told CTV News Edmonton from Portland, OR.
According to the FD Foundation, fewer than 350 people live with FD worldwide. The condition is most commonly seen in people with an Ashkenazi Jewish heritage.
"A rare disease is considered rare if there are 200,000 people or fewer," FD Foundation executive director Lanie Etkind told CTV News Edmonton from New York, NY. "So you can imagine, even within a rare disease category we are ultra-rare."
It's for that reason Etkind says awareness of the disease is crucial.
"What happens when you have a very small community of a rare disorder, it's very hard to find funding to support the work that you do," she said.
"It's very hard to find foundations that want to support our work because they're looking for impact, and as soon as you say, '300 people,' they lose interest."
WHAT IS FAMILIAL DYSAUTONOMIA?
FD affects the autonomic and sensory nervous system and causes reduced sensitivity to pain and temperatures.
People with FD are unable to produce tears and experience episodes of cyclical vomiting accompanied by high blood pressure and increased heart rate.
According to Etkind, researchers have been able to isolate the gene that causes FD, meaning it can be discovered in utero.
"Not just FD, but all of the other genetic diseases that are out there can be prevented if people know to get tested."
'A HEART OF GOLD'
Rowena Schwartzberg said her son Stevie challenged himself with box jumps, which is why they chose that activity for their campaign.
"Our daughter Daryl suggested we do the box jump challenge," she said. "We're just challenging people to jump on whatever box they feel comfortable and it's really a matter of challenging yourself."
When speaking of his late son, Jack Schwartzberg's love was clear.
"His smile, his love for life, family and friends. His kindness and sincerity and above all he had a heart of gold that was a blessing to every life he touched," he said.
Jack and Rowena Schwartzberg's son Stevie died from Familial Dysautonomia (FD) four years ago at the age of 35. (Source: Jack and Rowena Schwartzberg)
"Someone likened Stevie to a shooting star whose light burned brightly but too shortly," Rowena Schwartzberg added. "We're just basking in his glow."
Donations for the FD Box Jump Challenge can be made online.
CTVNews.ca Top Stories
'A beautiful soul': Funeral held for baby boy killed in wrong-way crash on Highway 401
A funeral was held on Wednesday for a three-month-old boy who died after being involved in a wrong-way crash on Highway 401 in Whitby last week.
'Sophisticated' cyberattacks detected on B.C. government networks, premier says
There has been a "sophisticated" cybersecurity breach detected on B.C. government networks, Premier David Eby confirmed Wednesday evening.
Police handcuff man trying to enter Drake's Toronto mansion
Toronto police say a man was taken into custody outside Drake's Bridle Path mansion Wednesday afternoon after he tried to gain access to the residence.
Biden says he will stop sending bombs and artillery shells to Israel if they launch major invasion of Rafah
U.S. President Joe Biden said for the first time Wednesday he would halt shipments of American weapons to Israel, which he acknowledged have been used to kill civilians in Gaza, if Prime Minister Benjamin Netanyahu orders a major invasion of the city of Rafah.
Rookie goalie Arturs Silovs to start for Canucks in Game 1 vs. Oilers
Rookie goalie Arturs Silovs will start in net for the Canucks as Vancouver kicks off a second-round series against the Edmonton Oilers Wednesday night.
Nijjar murder suspect says he had Canadian study permit in immigration firm's video
One of the Indian nationals accused of murdering British Columbia Sikh activist Hardeep Singh Nijjar says in a social media video that he received a Canadian study permit with the help of an Indian immigration consultancy.
Pfizer agrees to settle more than 10K lawsuits over Zantac cancer risk: Bloomberg News
Pfizer has agreed to settle more than 10,000 lawsuits about cancer risks related to the now discontinued heartburn drug Zantac, Bloomberg News reported on Wednesday, citing people familiar with the deal.
Quebec premier defends new museum on Quebecois nation after Indigenous criticism
Quebec Premier Francois Legault is defending his comments about a new history museum after he was accused by a prominent First Nations group of trying to erase their history.
U.S. presidential candidate RFK Jr. had a brain worm, has recovered, campaign says
Independent U.S. presidential candidate Robert F. Kennedy Jr. had a parasite in his brain more than a decade ago, but has fully recovered, his campaign said, after the New York Times reported about the ailment.