Sunday, 16 October 2016

Speaking at fundraisers

Sorry for totally going MIA this week. I was in NB, spending the week with my family. We made Christmas cards, worked on some Christmas presents, and ate all of Mom's food. Amy and I also managed to make it skating, horse back riding, and swimming with Mom one night. After the week ofactivities, I'm ready for a day of relaxing.

Last night all of us drove to a CF research fundraiser in Richibucto where Amy and I gave a 5 minute spiel about what it's like to have CF. It was a long drive for such a quick speech but I guess it's always better for people to hear from someone living with the disease.

We never really know what to say at these things. There is a balance between talking about the facts of CF and research and telling our life stories. More people want to hear about our life stories but without the background of knowing what CF is as a disease and how treatment has progressed over the last 50 years, it doesn't make as much sense.

And currently, as my CF experience is about living post-transplant and Amy is in that limbo between being too healthy to be listed but yet too sick to work, both of us are more focused on transplants than aerosol masks or digestive enzymes. I felt like maybe we should've been handing out the organ donation flyers at the end of our talk.

I hope they raised enough money for all the work that went into the event to have been worth it. Fundraising is so much work. Not that I'm involved but watching Dad help out and organize events is exhausting. Not only setting up the events themselves but then coming up with new ideas all the time. There are so many good charities that organizations are in such a competition for money that it seems like they need to come up with something bigger and better every time. CF needs to find something like the cancer societies 'shave your head' fundraisers, those seem to always do well.

Except as it's an invisible disease, there really isn't that much exciting to do. "Drink this boost for CF!" "Breathe through this straw for CF!" "Have a coughing fit for CF!" None of those sound appealing. I'll keep brainstorming.

Anyway, thank you to all the CF chapter volunteers who work so hard every year to raise money and support us and CF research! It's very much appreciated.

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