Crafts, Cooking, and Contemplating Life : Walk to Make Cystic Fibrosis History

It's that time of year again! Time for the Walk to Make CF History! Well, the walk doesn't actually happen until May 27th but since I've registered, I figured it's time to talk about it.

This year the Moncton CF chapter is having a 5 km run as well as the usual 2 km walk. Isaiah and I are planning on doing the 5 km as part of our "Five 5 km runs this year." I really need to start seriously jogging again if I'm going to make it. Hopefully a few other people will join us this year.

So, my annual pitch of why you should support the Walk or Cystic Fibrosis Canada in general:

1) CF Canada does a lot to fund research into the causes and treatments of cystic fibrosis. Their top three areas of research funding are currently:

Infection research

"Research in infections helps scientists to understand how bacteria and mold in the lungs work and develop better treatments."

An issue close to Amy's lungs as she tries to prevent infections from deteriorating her lungs.

CFTR protein research

"CFTR protein research involves studying the structure and function of CFTR proteins with the aim of restoring their function, so that chloride ions will be able to move freely in and out of the cell, preventing the build-up of thick, sticky mucus."

Targeted research programs and partnerships

"Working with others in the CF community to advance knowledge and treatment by matching funds with partner organizations and institutes, and assembling teams of CF experts to lead novel research programs moves the field forward."

There is a lot more information about what is currently being researched and funded on the CF Canada website.

Looking at the "Where we invested 2017-2018" list of projects that have been funded, there are many that directly benefit me personally. Like this one from the University of Alberta, Edmonton: The Canadian National Transplant Research Program: Increasing Donation and Improving Transplantation Outcomes.

Most of the projects are for those living with their CF lungs like the one from the University Health Network in Toronto: Personalized microbiology in cystic fibrosis pulmonary exacerbations: Assessing the pulmonary microbiota as a predictor of treatment response.

And many projects will help the next generation of those with CF like this one from McMaster University in Hamilton: Metabolomics for improved screening of cystic fibrosis: better diagnostics without carrier identification.

2) Funding also helps directly with specialized care which is vital in treating CF. Having a specialized CF clinic in Halifax has been a huge benefit to my family. The Halifax team knows the latest research and treatments and the best models of care. Without a specialized team, people with CF would be relying on general practitioners who do not have the time to research all the latest treatments for their complex patients.

Additionally, having access to an entire team of specialists, including a dietitian, physiotherapist, social worker, and psychologist who know the ins and outs of Cystic Fibrosis helps provide a holistic approach to treatment that would otherwise be lacking. The dietitian and I have a pretty solid relationship after years of trying to get my body to gain weight and, now that I'm finally at a healthy weight, discussing diabetes management. She has been indispensable in my care over the years.

3) Cystic Fibrosis Canada also helps fund transplant programs across the country. An issue close to my heart (and lungs...mostly lungs). Thanks to research into medication and treatments, surviving and living well after a lung transplant is becoming more and more common. As a result, lung transplants have become more routine for people with CF who are at the end of their lives and CF Canada is putting more money into transplant research every year. In 2017, Ontario preformed 166 lung transplants, up from 145 in 2016.

4) Cystic Fibrosis Canada is a strong advocate for those with CF.

The organization advocated for new born screening which "all of the provinces and territories have implemented, except Quebec, which has agreed to implement in 2018." This is important because "early diagnosis for cystic fibrosis through newborn screening allows for immediate intervention and treatment. Early interventions have been shown to: improve height, weight, and cognitive function, help maintain healthy respiratory function and reduce hospitalizations; they may also increase life expectancy."

CF Canada is also a strong advocate for fighting to get breakthrough medications like Kalydeco©, Cayston©, Okrambi, and TOBI covered for Canadians with CF. "Timely access to CF medications improves health outcomes and helps people with cystic fibrosis live longer, healthier lives. This benefits not only the individual patient and their family, but Canada’s public health system as well."

- from cysticfibrosis.ca/our-programs/advocacy/

5) If nothing else, a charitable tax receipt will help during tax time!

Donate to my walk page and help me reach my goal of 150$!

Donate to Isaiah's page and help him reach his goal of $50!