Jane Rivest has been a fixture at every Betty’s Run for ALS, offering assistance and helping to organize the event’s volunteers for the last 18 years.
Jane has been involved in all 18 runs. She was there when Betty Norman, the run’s namesake, and a few friends started the fundraising event in 1997. Sadly, the first run would prove to be Betty’s last as the disease claimed her life that summer.
“I was her caregiver from April until July, until she passed away,” remembers Jane. “Before that, I'd spend a day a week with her just to help her out with things that needed doing and I learned ‘Betty 101’.”
Spending time with Betty allowed Jane a glimpse into the daily battles of the ALS patient.
“You know you cannot learn about ALS out of a book,” said Jane. “There is no book that says, ‘This is the way it goes’.”
“It's with the people that you learn about ALS and that's what Betty taught me.”
Amyotrophic Lateral Sclerosis (ALS), commonly referred to as Lou Gehrig's disease because it took the life of the baseball great, is a progressive neuromuscular disease which paralyzes voluntary muscles.
Following Betty’s passing, Jane was hired by the ALS Society. Karen Caughey, executive director of the ALS Society of Alberta, says it's hard to describe the impact Jane’s contributions have on the organization’s clients.
“She reaches out and she surrounds, she almost embraces, people and our families,” explains Karen. “She's always said to me, ‘Just do the right thing’, so she inspires me to do what we need to do to support our families.”
Jane’s dedication and commitment was recognized with a Queen's Diamond Jubilee Medal, presented to her by Lieutenant Governor Donald Ethel.
Karen Caughey says the award, acknowledging Jane’s contributions, could not have been presented to a more deserving person. Karen says she’s still moved by a Jane story from years ago, when Jane helped a man, dying from ALS, attend his daughter’s graduation by equipping a van to transport him to the ceremony.
“She got him to that graduation service,” said Karen. “That young woman, I saw her in June, so it was just after her dad had passed, and this woman embraced Jane and would not let go. (She) was just sobbing because she will have this memory forever.”
Angels are a prominent decoration in the Rivest home, which, according to Karen, is an appropriate symbol because Jane is an angel to so many people.
The 2014 Betty's Run for ALS raised more than $550,000 for ALS research and support.
For all she does for people coping with ALS, Jane Rivest is this week’s Inspiring Albertan.
With files from CTV's Darrel Janz
