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
Grandparent scam: London, Ont., senior beats fraudsters not once, but twice
It was a typical Tuesday for Mabel Beharrell, 84, until she got the call that would turn her world upside down. Her teenaged grandson was in trouble and needed her help.
Deaths of 4 people on Sask. farm confirmed as murder-suicide
The deaths of four people on a farm near the Saskatchewan village of Neudorf have been confirmed a murder-suicide.
CRA no longer requiring 'bare trust' reporting in 2023 tax return
The Canada Revenue Agency announced Thursday it will not require 'bare trust' reporting from Canadians that it introduced for the 2024 tax season, just four days before the April 2 deadline.
Full parole granted to man convicted in notorious 'McDonald's murders' in Cape Breton
The Parole Board of Canada has granted full parole to one of three men convicted in the brutal murders of three McDonald's restaurant workers in Cape Breton more than 30 years ago.
Incident on Calgary's Reconciliation Bridge comes to safe resolution
Nearly 20 hours after a man climbed and remained perched on top of the Reconciliation Bridge in downtown Calgary, the situation came to a peaceful resolution.
Sunshine list: These were the Ontario public sector's highest earners in 2023
Ontario released its annual sunshine list Thursday afternoon, noting that the largest year-over-year increases were in hospitals, municipalities, and post-secondary sectors.
George Washington family secrets revealed by DNA from unmarked 19th century graves
Genetic analysis has shed light on a long-standing mystery surrounding the fates of U.S. President George Washington's younger brother Samuel and his kin.
'We won't forget': How some Muslims view Poilievre's stance on Israel-Hamas war
A spokesman for a regional Muslim advocacy group says Conservative Leader Pierre Poilievre's stance on the Israel-Hamas war could complicate his party's relationship with Muslim Canadians.
Why some Christians are angry about Trump's 'God Bless the USA' Bible
Former U.S. President Donald Trump is officially selling a copy of the Bible themed to Lee Greenwood’s famous song, 'God Bless the USA.' But the concept of a Bible covered in the American flag has raised concern among religious circles.