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
Spectacular aurora light show to be seen across Canada Friday night
A rare and severe solar storm is expected to bring spectacular displays of the northern lights, also known as aurora borealis, across much of Canada and parts of the United States on Friday night.
Town of Fort Nelson, B.C., ordered to evacuate due to wildfire
The entire town of Fort Nelson, B.C., as well as the nearby Fort Nelson First Nation, has been ordered to evacuate due to an out-of-control wildfire.
Snowbirds in Vancouver for puck-drop flyby as Canucks face Oilers
The Canadian Forces Snowbirds will be performing a flyover across downtown Vancouver at the start of tonight's Stanley Cup playoff game between the Canucks and the Edmonton Oilers.
McGill University seeks emergency injunction to dismantle pro-Palestinian encampment
McGill University has filed a request for an injunction to have the pro-Palestinian encampment removed from its campus.
Which Canadian cities have the highest and lowest grocery prices?
Where you live plays a big factor in what you pay at the grocery store. And while it's no secret the same item may have a different price depending on the store, city or province, we wanted to see just how big the differences are, and why.
Swarm of 20,000 bees gather around woman’s car west of Toronto
A swarm of roughly 20,000 bees gathered around a woman’s car in the parking lot of Burlington Centre.
Video shows naked raccoon catching B.C. family by surprise
When Marvin Henschel spotted a strange and hairless creature wandering through a front lawn in B.C.'s Lower Mainland, he could barely believe his eyes.
Barron Trump declines to serve as an RNC delegate
Former U.S. President Donald Trump's youngest son, Barron Trump, has declined to serve as a delegate at this summer’s Republican National Convention, according to a senior Trump campaign adviser and a statement from Melania Trump's office.
Out-of-control wildfire prompts evacuation alert for Fort McMurray, Saprae Creek Estates Friday night
An evacuation alert was issued for two Wood Buffalo communities Friday night, as crews battled an out-of-control wildfire near Fort McMurray.