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!

Or, if you can't decide between us, donate to the team page and help us reach our goal of $1000!

Thank you, everyone!! 

Team mascot, Cody thanks you as well.

Stephen Hawking died on Wednesday and his passing brought to light a lot of the issues surrounding how people with disabilities are portrayed and talked about in the media.

Instead of rewriting columns about the use of language and Stephen Hawking, I'm linking to two articles that I thought were really well written about his passing and the coverage surrounding it. I hope you take a moment to read them!

"The fact of the matter is that Stephen did all of his amazing work with his disability — not in spite of it. To erase that fact of his life as we mourn the loss of him in our world is to ignore part of who he was simply because it wasn’t something that could be easily understood. He did not need to be free of his disability and wheelchair to change the world, so why must he be freed of it now that he has passed on?" 

From TeenVogue: Saying Stephen Hawking Is "Free" From His Wheelchair Is Ableist

"As a disabled person, however, I'm also troubled by the way the media has framed his life and his passing. Among the run-of-the-mill condolences I saw on social media, there were a few that bothered me, including a meme depicting the spirit of Mr. Hawking walking out of his wheelchair, as if he were now free of it.

As a fellow wheelchair user, these kinds of depictions, while perhaps well-intentioned, sting. I wouldn’t want someone to erase my identity as a disabled person in my death, as it is a huge intrinsic part of who I am and how I see the world around me. It is unfair that in order for us to celebrate his life, we feel it necessary to remove a part of who Stephen Hawking was: a disabled man."

From Men's Health: I’m a Disabled Man, and Here's What You're Getting Wrong About Stephen Hawking's Death

This cold has been endless. It got significantly worse last Sunday night when I woke up at 2am with a fever. It was low grade but I was so uncomfortable and shaking so much. Isaiah piled all the blankets on me until my feet were warm but the rest of my body felt like an ice block. He kept promising that I was actually quite warm to touch and turning the heat up to 80 degrees still wasn't going to help.

My only fever experience has been with chemotherapy so of course I was panicking. I thought for sure I had the flu so then I started spiralling with "I could die from this. Wouldn't that be unfortunate? I don't want to die from the stupid flu. Tell my family I love them!"

Isaiah told me I was being ridiculous and to take some Tylenol. I would have gone to the emergency department if it weren't a 20 minute drive away. After the Tylenol kicked in, I stopped shaking and managed to get a bit of restless sleep. In the morning I called my CF team who prescribe me two antibiotics and weren't that concerned.

The fever really knocked me out for almost two days. I spent Monday sleeping and then Tuesday trying to get some energy back. I think in the end, I overdid it last weekend when I thought I was finally over this cold and had maybe exercised a bit too hard.

I'm still nervous it's going to happen again but this time my cough does feel almost gone. The antibiotics have kicked in so I am more tired because of that but overall, I feel an improvement.

It's weeks like this where I'm thankful that I only work one day a week. A lot of people ask when I'm going to move to more hours but I'm quite happy where I am. The truth is, I will probably never be able to have a full time, or even a true part time job. Even when I'm not sick, I need to be able to spend days relaxing when I'm not feeling 100%. I also need to spend a lot of time exercising so that I can keep these lungs healthy for as long as possible.

The upside of this cold is that I've been staying inside and working on some craft projects. I've been practicing my calligraphy, finished knitting a hat for Isaiah, and made myself a prototype apron! I bought fabric in Hawaii to make an apron but thought I should make a trial one first with fabric I care less about.