Innovative Medicines Revolutionizing Lives #CFcantwait
CALGARY, AB, Sept. 10, 2021 /CNW/ - The 65 Roses Ladies Golf Classic is pleased to introduce Cystic Fibrosis Canada Advocate and our guest speaker for 2021, Amanda Bartels. Amanda is 38 years old, a wife, a mother of one, and she has cystic fibrosis (CF).
In spring 2020, Amanda was the sickest she had ever been with CF spending the better part of a year in the hospital, but her life was changed dramatically when she received compassionate access to an innovative new drug called Trikafta. She went from being on continuous oxygen and taking steps to qualify for a double lung transplant to cycling the Banff Legacy Trail just a few months after receiving this lifesaving drug.
Years of research have lead to the development of revolutionary drug treatments like Trikafta. However, getting government approval and affordable access to these drugs is a slow and arduous process and #CFcantwait.
"As someone on compassionate access, who was denied on my first application because I was 'not sick enough' I know and understand the devastating mental toll this takes on people with CF as well as their families and support systems. The four months between being told 'no' and then being even sicker finally and getting a 'yes' were some of the hardest months from both a mental health and physical health perspective I have endured. Truthfully, it is cruel to force someone to get sicker to access a drug that is as effective as Trikafta."
"CF has waited long enough and we must ensure all Albertans and Canadians with CF get Trikafta as soon as possible" says Amanda.
Now in its 32nd year, 65 Roses Ladies Golf Classic is grateful to have been able to contribute over $1.2 million to Cystic Fibrosis Canada. "Money raised at fundraising events is strongly relied on to support medical research, clinical care and advocacy efforts for individuals living with cystic fibrosis (CF)," says Cystic Fibrosis Canada, Alberta Fund Development Associate, Kristina Jakeman.
For more information on the 65 Roses Ladies Golf Classic contact Debbie Carver at 403-630-0302.
Cystic Fibrosis Canada
Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. At present, there is no cure.
CF causes various effects on the body, but mainly affects the digestive system and lungs. The degree of cystic fibrosis severity differs from person to person, however, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function, will eventually lead to death in the majority of people with CF.
Since 1960, Cystic Fibrosis Canada has invested more than $300 million in leading research, care and advocacy, resulting in one of the world's highest survival rates for Canadians living with cystic fibrosis. The median age of survival is 51 years, however 50% of those that die from cystic fibrosis are under 35. There is no cure. #CFcantwait
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Thank you to CISION for sponsoring this announcement.
SOURCE Cystic Fibrosis Canada- Calgary & Southern Alberta Chapter
Cystic Fibrosis Canada - Calgary & Southern Alberta Chapter, Phone: (403) 266-5295, Email: [email protected]
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