Charitable Impact Stories: Cystic Fibrosis

Charitable Impact Stories is a series of tales, sharing how donations from the Chimp community help charities who receive them. To date, Chimp has sent more than $8.4million to over 2000 Canadian charities. This is our first story.

Kimberly Bowie has been involved with Cystic Fibrosis Canada since her friend and film director Philip Lyall “introduced me to an incredible, brave, inspiring, charismatic and heartbreakingly beautiful young woman named Eva Markvoort.”

This is Eva at the  premiere screening of 65_RedRoses, and on separate evenings of the inaugural Lawn Summer Nights in 2009.

When Kim learned about Eva’s story, having been “diagnosed with cystic fibrosis, the most common fatal genetic illness affecting young Canadians, at the tender age of 1,” Kim was “24, active socially, and aware of the impact I could have on sharing her story, growing donations for CF, as well as helping spread the word on the ease and vitality of becoming organ donors.”

On the left, Kim + Eva at a memorial soccer tournament to honour of Kim’s friend Brenna Innes; Eva + Kim (2nd and 3rd from the left) at the launch of 65_RedRoses. 

CF is a respiratory illness that attacks the lungs, building up scar tissue within the lungs to the point where CF sufferers are literally drowning from the inside as their lungs fill with mucus. Philip co-directed the award winning documentary, 65_RedRoses, which chronicled Eva’s life on the double lung transplant list, awaiting a surgery to save her life.

Fast forward 5 years, and Kim now serves as a Vancouver Chapter Board of Directors Member for CF Canada. She sat down with us to share some of the impact donations from the Chimp community have made to those living and helping to support those with Cystic Fibrosis.

Chimp: Who/what does CF provide or do?

Kim: Cystic Fibrosis Canada first and foremost benefits all Canadians living with CF. It provides research for treatment, care for families, education, advocacy and beyond.

Ch: To date, $696.94 has been donated to Cystic Fibrosis Canada via Chimp’s Community. How do donations, in general, help Cystic Fibrosis?

KB: Donations do a number of things for CF. As CF is still an incurable disease, funds go towards research for a cure, for better treatment, screening, education and advocacy. It’s such a multifaceted disease with many different strands of illness, so while we are perpetually on a quest for a cure, we are also raising money to improve existing treatment and quality of life measures for CF patients. Advocacy is hugely important because while CF is the most common fatal genetic disease affecting young Canadians, it’s not nearly as widely known as we’d like. People need to know about it, to care. That’s part of the driving force behind one of our fundraising events, Lawn Summer Nights.

Every dollar that goes towards research or clinical care helps patients receive treatment, education, or supports research. Also, every donation (even a dollar) supports us in our awareness endeavours. It is one more person who knows and supports CF.

Ch: Tell us more about what CF is currently fundraising for.

KB: Right now one of our biggest pushes is to get the government to help fund KALYDECO™, a medication that is highly effective in treating CF patients with the specific G551D mutation in the Cystic Fibrosis Transmembrane Regulator (CFTR) gene. Treatment costs about $300,000 per year and is not covered by Canadian healthcare yet. It only affects about 4% of CF sufferers, but the treatment is a simple, two pills a day regimen and restores patients to near normal health. Needless to say, every dollar CF Canada receives is cherished and well spent. For a full breakdown of expenditures, please go here.

Ch: Every charity acknowledges donors a little differently. What does CF do?

KB: Our office staff and board members call to thank donors, provided we have their contact information. For a long time, it was hard to keep track of where donations were coming from as some donors phone their gifts in, mail them in, or donate nationally…it has been a bit of a challenge and we never want to miss out on showing our gratitude and thanks to donors. We’re starting a new database now to make donor tracking much easier, something I know Chimp has really nailed down to an artistic science. We’ve started to thank donors who give via Chimp, using Chimp’s thanking feature.

Kristy Gill, our fabulous new Executive Director will also hand deliver tax receipts and thank you cards if the donor makes an exceptional, or a first time gift. For our most recent event, Lawn Summer Nights, the office sent out personally addressed letters to all donors which is no small feat, but an appreciated one, based on feedback I’ve gotten back personally from friends and family who donated.

Ch: How can Canadians help Cystic Fibrosis?

KB: I can’t stress enough how easy it is to give now, both donations of money, and organs. It takes minutes to register as a donor, and BC Transplant allows you to choose just what parts of you, you give. If you aren’t already a donor, I urge you to sign up. Registration is done provincially, though the Canadian federal government is working to create a national registry. As for donating directly to Cystic Fibrosis Canada, that’s easier than ever, too, and here’s where Chimp comes in. My friend Eva’s legacy is to make CF stand for “cure found” and every donation helps.

If this cause speaks to you, you can get involved, or make a donation here.