A musical fundraiser that will bring in money for Cystic Fibrosis Canada is so much more than just a charitable event.
“It’s all about having hope – even though sometimes it’s really hard to have hope when things are going wrong – and believing that you can get that miracle,” said event organizer and cystic fibrosis patient Lauren Clift.
For the 26-year-old Chilliwack woman, that miracle is a drug called Trikafta and it’s exactly the type of drug she’s been fighting for her entire life.
She was diagnosed with cystic fibrosis, a genetic disease that causes mutations in cells, when she was just three weeks old. The main symptom is a thick, sticky mucous in the lungs, but it also affects the digestive system, sweat glands, reproductive system and more.
Trikafta came out in 2019. About 90 per cent of cystic fibrosis patients in Canada have a mutation called delta F508, and they have been approved for the drug.
READ MORE: B.C. expands access to cystic fibrosis treatment Trikafta
“My family and I have fundraised our whole lives and I always heard the phrase ‘fight for a cure.’ It was kind of this magical, mystical thing you never thought you would get and then all of a sudden there’s this miracle drug that fixes the mutation in the cell so that your cells function normally. It basically rids you of the symptoms of cystic fibrosis as long as you’re taking this drug.”
But, Clift does not have delta F508. She, along with about 200 other Canadians, has a rare mutation and therefore does not qualify for Trikafta.
Initially, she thought the drug would not help her condition. But over the past year, she has learned that it could.
“That’s been a big struggle for me in the past few years, especially in the past few months, knowing there’s this beautiful miracle out there that people are experiencing and no longer fight for, and I’m still here fighting for it,” Clift said. “In other countries around the world, people with my mutation are on it and healthy. It’s just Canada that is behind on that.”
Now she’s raising awareness and funds for Cystic Fibrosis Canada by way of a musical cabaret fundraiser with the main goal of getting Trikafta approved for patients like her.
The show ‘When You Believe: A Cystic Fibrosis Musical Fundraiser’ is set for Saturday, May 18, at Evergreen Hall in Chilliwack.
Over the years, her family has raised thousands of dollars every year for Cystic Fibrosis Canada through various events, but she’s calling this their biggest fundraiser yet.
Clift wrote the script, choreographed it, and directed the music.
She’s also acting in it alongside 10 of her friends. There will be four big dance numbers, six group pieces, plus duets and solos.
It’ll be a mix of Broadway numbers, Disney songs, and pieces by Frank Sinatra.
“It’s a little chaotic and hilarious, but also ends up being quite wholesome and heart-warming.”
The event includes a silent auction (e-transfer or cash), a cash bar, and concession.
“Singing is not only a fun hobby for me, for people with cystic fibrosis, using your lungs and being active is so important. Every time I do a musical, my lung function will go up a little bit…because it helps clear that mucous out.”
Clift said it’s vital that fundraising and awareness happen right now because Health Canada is in the process of reviewing Trikafta and its effect on cystic fibrosis patients with rare mutations.
Health Canada has in-vitro evidence that it works, but they typically don’t approve a drug for use without human trials, which could take years.
Clift and her family have spent the last few months working with advocacy groups, and meeting with MLAs and MPs to get the word out about the drug.
She wants them to know that “when this drug comes across your desk, when this approval comes, there’s someone in your region who is affected by it.”
If Health Canada and the Canadian Agency for Drugs and Technologies in Health give the OK for the drug, it will go to the provincial level and Clift’s hoping that with all the awareness being made and funds being raised, officials will approve it.
In the meantime, she will continue to take medications including digestive enzymes so she can digest food, and do lung therapies and treatments.
“With Trikafta it’s one pill a day. Some people say they don’t even have to do their lung therapy, they don’t even have to take their enzymes because their body just functions normally.”
Clift said there has been “quite a decline” in her health lately.
“My mom is a pharmacist. She dispenses Trikafta to others and has to watch these patients get better and healthier while her own daughter is getting sicker.”
To help Clift and her family raise money for Cystic Fibrosis Canada, people can buy tickets to ‘When You Believe: A Cystic Fibrosis Musical Fundraiser’ online. Tickets are by donation. Those who cannot attend the musical and want to donate to the cause can do so at the above website.
The event is set for Saturday, May 18, at Evergreen Hall, 7 p.m. Doors and silent auction open at 6 p.m.
For more, go to facebook.com/events/1076137040357416.
Looking for more events taking place in and around Chilliwack? Check out What’s happening Chilliwack in our community section.
