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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Tough Mother!

It’s been a whirlwind of a month. April and May tend to be filled with fundraising activities, public speaking engagements, and Great Strides Walk/Fun Run planning (on top of working part time and caring for 2 young children). After burning out last year, I thought I would relax a bit this year. It turns out that ‘relax’ means doing everything I did before, plus adding in several appearances on TV to launch the Mom of the Year campaign (www.momoftheyear.ca) and promote the Great Strides Walk/Fun Run AND train and compete in the Tough Mudder! Whew. I feel exhausted just writing it. Maybe someone will have to buy me a dictionary next year.

Oh yes, and I also get to watch a bunch of little kids ride their tricycles this morning! A friend of mine’s daughter goes to a local preschool. They decided to choose Cystic Fibrosis Canada as their charity for their annual Trike-A-Thon. This is special to me on a few levels. First, it’s awesome to have my friend’s support. Second, May is Cystic Fibrosis Awareness Month. What a great opportunity to tell parents in Dundas about this disease. Third, Sophia will be entering kindergarten this fall. In the 1960s, most children with cystic fibrosis didn’t live long enough to attend kindergarten. Now, half of those living with cystic fibrosis are expected to live into their 40s and beyond. What progress! I’m so thankful for all the research that has been done in the last 50 years. But I know there is so much more to be done. Sophia will still lead a life filled with chest treatments, pills, and hospital visits unless a cure or effective control is found. Thank you St Mark’s Preschool for increasing the number of tomorrows I share with Sophia!

In that mess of a first paragraph above, I mentioned completing the Tough Mudder. If you recall from my previous post (titled “Tough Mother?”), I shared my motivation for doing this race: “I am healthy. The biggest obstacle I have to face is my weak muscles. I have nothing to complain about. There are thousands of people out there with cystic fibrosis who are struggling to take each breath. I have no excuse not to do this race.” My friends Amy and Aaron Bury encouraged me to enter a team, named ‘Just Breathe,’ and we did just that last weekend. For every step of the 17 kilometres. For every gruelling second of the 22 obstacles designed by the British Special Forces. We breathed. We shivered. We sweated. We struggled. And We Completed It! Thank you Aaron and Amy for coming up with this crazy idea. Team Just Breathe raised almost $1000 for Cystic Fibrosis Canada! As Sophia gets older, I will be proud to share this accomplishment with her. Already she’s amazed by the obstacles I’ve described to her.

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Perhaps one day our whole family will enter a team!

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This weekend we are part of the Great Strides Walk/Fun Run. Our team Zoom Zoom (Just Breathe) has raised almost $32,000 so far this year, making our 5-year total over $125,000!!! Wish us luck as we aim to reach our $40,000 goal by Sunday. We’ve challenged another local team in the “Race to 40K” : http://youtu.be/9D-DMRDiUMs

 

“Volunteering is an act of heroism on a grand scale. And it matters profoundly. It does more than help people beat the odds; it changes the odds.” – Bill Clinton


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An Ultimate Success

After a couple of months of planning, we pulled off our 2nd Annual Charity Ultimate Tournament last weekend. My friend TJ is a great ‘ideas’ kind of guy. He approached me in January and suggested we try to make this year’s tournament bigger and better. Last year we had 44 people join our overnight Ultimate tournament (11pm-4am is a tough sell). Even I wasn’t all the keen on staying awake during my prime sleeping hours. This year we decided to try for an all-day tournament. We secured our indoor location, Soccerworld, for March 30th. TJ thought it would be a good idea to try 4 vs 4, and to divide the soccer fields into smaller playing fields. Sounded great to me. Having very little tournament experience, and absolutely no experience with the 4 vs 4 format, I had no idea what I was in for.

We started spreading the word, and in no time we had teams and individuals signing up. We ended up with 14 teams from all over Ontario (London, St Catharines, Hamilton, Toronto, Kitchener-Waterloo, Kingston, Oshawa) and even some brave souls from Buffalo. 145 amazing individuals signed up for our tournament! A 3.5-fold increase from last year. We even had VC Ultimate jump on board and offer a great deal on jerseys. This was turning from a few friends gathering to play Ultimate, to a legitimate tournament!

Two weeks before the event, I found out that my ‘team of volunteers’ who were supposed to be securing grocery store gift cards to pay for the tournament food weren’t having any success. With 2 sick children, a husband organizing a conference and then away at the conference, we had to do some last-minute scrambling. Incredibly, we were able to secure over $300 in gift cards from Fortinos, Metro, Whole Foods, FreshCo, and Sobeys. More than enough to supply a lovely array of bagels, fruit, granola bars, Gatorade, etc.

Thankfully TJ knew what he was in for, and had no trouble working out playing schedules for our Competitive and Recreational divisions. After some last-minute behind-the-scenes stressful moments (timing changes, accommodating individuals and juggling a multitude of scheduling needs), tournament day arrived. It went off without a hitch. Looking at the facility from above, it was a beautiful display of organized chaos (see picture below). Our most spirited team, Inner Ninjas, even arrived with personalized jerseys, swords, bandanas, prizes, and music! I can’t speak for anyone else at the tournament, but I had a great time. I love watching good Ultimate, and I love playing mediocre Ultimate (I bet I’d love being really good at the sport too, but I’m happy where I’m at).

From registration alone, we were able to raise $5000 for Cystic Fibrosis Canada. There are more donations coming in daily from Ultimate players who weren’t able to attend the tournament. Being able to donate funds to vital research is what gives me hope for my daughter Sophia’s future. What an awesome community to be a part of. Thank you Ultimate players. We’ll see you next year for an even bigger tournament!!

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