My remarks during the opening ceremony of our cf walk yesterday…
Happy Great Strides day, everyone! This looks and feels just like a big birthday party! We are here to celebrate Great Strides with all our CF fighters…including my daughter. Instead of wearing a party hat, I think I’m going to stick to my old well-worn Aviary hat that says ‘cure cf.’
This morning, I actually want to talk with you some more about hats. Like many of you, I wear many hats. I wear the hat of daughter, sister, wife, and friend. I also wear the hat of mom to my two daughters, Av and Lou. I wear the hat of a CF mom for Av. I wear the hat of her caregiver. And now that Av is a teenager, I am proud to say I wear the hat of her partner. We have reached the incredible milestone where she and I now share in many of the responsibilities of her care.
As for her care, it’s never a party. It’s no fun for her to be constantly fighting aggressive infections. It’s no fun watching your daughter’s disease progress with every passing year.
But there is some good news, too, in the world of CF. Av would tell you, since she started taking one of the breakthrough treatments called Orkambi, she is breathing a little bit easier. It’s the CF Foundation that drove the research and development behind Orkambi in large thanks to fundraisers just like this one. Breathing easier is a gift. And that’s the best reason I can think of to be celebrating on Great Strides day.
Let’s circle back for a few more moments to hats! One of the most meaningful hats I wear is the hat of an advocate. I used to think being an advocate meant going to speak with our congressman about CF, and so we did that. Later I learned that being an advocate also meant standing up and speaking up for my daughter when she was sick in a hospital bed. I’ve done that.
But do you know what else makes an advocate? An advocate wears the hat of a walker. The hat of an awareness raiser. The hat of a fundraiser. An advocate is a champion who raises his or her voice for a cause she or he believes in. Do you know what that makes you? Because you are standing here today celebrating Great Strides with me and my daughter, you, too, are a CF advocate. Together we are amplifying the call for even better treatments for our loved ones, who valiantly fight cystic fibrosis, and one day, for their cure.
Fellow advocates, to borrow a line I hear often from our walk director: thank you for all you do! Hats off to you and happy Great Strides!