cysticfibrosismom

I'm just a regular mom, figuring out life with my daughter Sophia, who has cystic fibrosis.Take this journey with me.


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Your Donations Hard At Work

As many of you know, I am passionate (aka relentless) when it comes to fundraising for Cystic Fibrosis Canada. Through awards and events, we’ve been able to raise almost $250,000 since Sophia was born 4.5 years ago. I often give or arrange talks about where those fundraising dollars go, but I just realized that only a few people really ever get to hear those talks. Maybe I should share some of the exciting breakthroughs here. Maybe my excitement about where research is leading will be contagious? (This is the one time I will use that word with a positive tone).

I’ll give a quick disclaimer here: I am not a researcher. I am not an expert. What I write is based on what I understand to be true. I may be (a little bit) wrong, so please comment and let me know if I’ve misrepresented any ideas.

I’ve mentioned before that cystic fibrosis is genetic. It’s far more complex than that little word implies. There are over 2000 known mutations that lead to cystic fibrosis. They can largely be categorized into one of five different protein (CFTR) malformations. Recently a drug called Kalydeco was approved for use in the USA, Canada, and many other countries. If you are part of the 4% with the protein malformation it targets, it is an incredibly powerful control (not a cure) for cystic fibrosis. In very layperson language, it basically “opens the gate” to allow the protein to pass through and do its magic. Unfortunately Sophia is not in this group. She has 2 copies of deltaF508, which is the most common mutation, and leads to a slightly more complex protein malformation than the one Kalydeco targets. Sophia’s proteins need to be fixed up a little and then let through the gate. There are large-scale studies being done right now looking at the usefulness of Kalydeco combined with another drug. We’re waiting for the final results to be published soon.

Another complicating factor is the presence of modifier genes. These are ‘other’ genes that cause one person with deltaF508 to be quite sick, while another to be relatively well. Again, research is looking at identifying what these modifier genes are, and how we can tailor treatments to each individual with cystic fibrosis.

My bias in outlining only a couple of areas of research is obvious. These are the ones that seem most pertinent to Sophia right now, so I am most interested in them. There are hundreds of other studies funded by Cystic Fibrosis Canada every year. If you are interested, there’s a booklet published yearly on the Cystic Fibrosis Canada website (www.cysticfibrosis.ca).

Some flashy and fun stats to look at (courtesy of Shinerama):

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A Positive Energy- Thank You Shinerama!

Last week I was honoured to be invited to speak at Wilfrid Laurier University’s Shine Time. Since 1964, university students across the country have been raising funds for Cystic Fibrosis Canada during Shinerama. Last year Shinerama raised over $1 million dollars. This year, the students at WLU alone raised over $10,000/hour on Shine Day and managed to raise over $160,000 during their campaign. There are over 60 schools across Canada that participate in Shinerama. Unbelievable.

For the past 2 years, during Orientation Week, I have spoken to small groups of first-year students in a classroom setting. I’ve told them a bit about cystic fibrosis, and have shared our story with them. This year I was asked to speak to a larger group. I had no idea what I was in for. An upper-year Shinerama leader met me at my car and walked me across campus to a very large building. It is called the Athletic Complex. It has a seating capacity of over 2000. When I walked in, the bleachers were almost full and the floor was packed. Shinerama Leaders were rallying their “colour groups” by chanting at the tops of their lungs. I honestly thought the bleachers might break with all the stomping and jumping up and down. Although I couldn’t always hear the words (it was just so loud!), I knew that the message was about fighting cystic fibrosis and finding a cure.

I was speechless. All of these students were going to raise funds for my little girl. They were excited about it. They were jumping up and down. They were cheering and singing. Most of these incredible people had no personal connection to cystic fibrosis, yet there they were shouting loudly that together we’d find a cure. As the groups settled down, Olivia Montgomery (this year’s Campaign Director) told the students a bit about Shinerama and just before introducing me, yelled “Bling Bling”, to which the masses responded “CF ain’t no thing!” Their enthusiastic applause lasted long enough for me to gather myself together, regain my capacity for speech, and share my story.

As Sophia gets older, I find that 2 things are happening. First, it’s harder to give speeches without getting emotional. Second, I feel more motivated (perhaps laced with an undertone of desperation) to inspire others to help raise funds for research. Although I know it will continue to get more difficult for me, I’m happy to know that my dedication to finding a cure is unwavering. When passion is true, it doesn’t falter.

Thank you once again Shinerama students- for listening to my story, for volunteering your time, for sharing your energy, for sharing my tears, and for raising much needed funds for research. You are AMAZING.


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Thank you Shinerama!

Yesterday I spent the afternoon talking to 1st year students at Wilfrid Laurier University in Waterloo, Ontario. For many, it’s the first time they have lived away from home. This is the time in their lives when they will learn about themselves. They will discover what type of person they are. They will make important decisions about their futures. Whether they decide to remain in a Bachelor of Arts program or switch to Economics will pave the way for future careers. So early in this experience, I had the privilege to speak to them.

You see, WLU, like many universities across Canada, participates in Shinerama. This is a huge fundraiser for Cystic Fibrosis Canada. Nationally last year, they raised over $1 million for Cystic Fibrosis Canada. AMAZING. In order to both educate the 1st year students about cystic fibrosis and motivate them to spend large portions of their orientation week fundraising for us, I got to talk to several groups of students. It was a beautiful experience. The students were engaged. They were listening to my story. They were learning about my little girl- about all that she’s been through and about all that she will face. For me, it was cathartic. I got to share my fears, my hopes, my knowledge, and myself with these strangers.

One of the Shinerama leaders asked me if there was a person or a story that has stuck with me and motivated me. The question was unexpected, and I had to think about it for a bit. Then I looked up at these wonderful students and the answer was clear. It’s the people who have never experienced first-hand what cystic fibrosis means, yet are willing to spend countless hours fundraising for us, that inspire me. They could be sleeping in, getting to know their roommates, figuring out where their classes are. Instead they are running around campus cheering about how they are going to beat CF, washing cars, running BBQs, doing whatever they can for my daughter and the 4000 Canadians with cystic fibrosis. I am left speechless when I think about how awesome these young adults are. It’s easy to imagine why I’M motivated to find a cure, but what keeps THEM coming back year after year to raise funds for cystic fibrosis? In that moment I looked up and into the eyes of the students in that room, and I thanked them. From the bottom of my heart, I thanked them. Their kindness, their time, and their motivation, is what gives me HOPE. Hope for my daughter’s future is what keeps me going.

Thank you Shinerama students for making my daughter’s life longer and happier.