Jump up to raise money & awareness of rare genetic disease in honour of Stevie Schwartzberg OBM

A new social media campaign has been initiated in honour of Stevie Schwartzberg z"l to raise funds and awareness of Familial Dysautonomia, a rare genetic disorder.

by Jenna Soroka

(AJNews) – How much of an impact can a single box jump make?

With the help of social media, Daryl Schwartzberg believes it can make a significant impact.

Four years ago, her brother Stevie, passed away from a rare genetic disorder called Familial Dysautonomia (FD), at the age of 35, leaving behind devastated family and friends.

Despite the numerous challenges of living with FD, Stevie lived his life with optimism and laughter. He was a Grade 9 Class of 1998 graduate of Edmonton Talmud Torah School and was very active in Edmonton BBYO. Known for his smile, love of life, and kindness, his heart of gold was felt by everyone who had the opportunity to meet him.

To honour Stevie’s memory, his parents, Rowena and Jack Schwartzberg, established a mental health program at the Dysautonomia Center at NYU Langone back in 2018. Psychotherapy sessions are offered over the phone by licensed mental health counselor, Lily Armstrong, which have acted as a lifeline for patients during COVID. Children of Ashkenazi Jewish heritage are almost exclusively affected by FD, and only 350 people are currently living with FD globally according to the Familial Dysautonomia Foundation. As one can imagine when dealing with an incredibly rare disease, generating awareness and funds for FD support programs can be a challenge.

In recent years, the family held a successful golf tournament to help continue the mental health program established in Stevie’s honour. When COVID-19 hit, they had to find a new way to shine a light on FD that would keep the momentum going.

“A few years back I had the idea of some sort of box jump challenge,” Daryl shared. She recounted Stevie’s love for posting videos of his box jumps and how that inspired the current Box Jump Challenge which aims to put a spotlight on FD.

One of the special features of this fundraiser is that it is about challenging yourself. No matter how big or small the box or surface you choose to jump on, the Schwartzbergs encourage you to be safe and creative when filming.

Not only has the Edmonton Jewish community stepped up to the challenge, but you can find other familiar faces, such as Dean McDermott, Canadian actor and host of Chopped Canada, who have jumped on board as well.

In an instagram post to promote the #JumpforFD campaign, one of Stevie’s past trainers reiterated the Schwartzbergs’ sentiments about their son’s larger than life personality and infectious smile that would light up a room. “Stevie would accept no limits, he always stepped beyond what was expected of him and never backed down from a challenge,” Simon Bennett’s caption reads.

Whether or not you knew Stevie, or have a direct connection to FD or the Jewish community, the family hopes people will simply challenge themselves and continue to build this momentum.

There is no need to wait to be nominated! Jump for FD with your colleagues, sports team, household, at your school, or with anyone in your circle to share the message and incredible perseverance found in the FD community.

You can learn more about the Box Jump Challenge in honour of Stevie Schwartzberg, including how to participate, and how to donate at bit.ly/jumpforfd. Every contribution has a meaningful impact no matter the dollar value.

For further information about FD, head over to www.famdys.org.

Daryl hopes that “people across the country, and hopefully the world, will start to jump on board and not just to raise funds but also to increase awareness of this horrible disease.”

Are you ready to jump?

Jenna Soroka is a Local Journalism Initiative Reporter for Alberta Jewish News.

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