Mary Beth Cicero: Why I’m Walking in the Great Strides Walk for Cystic Fibrosis May 20

May is Cystic Fibrosis Awareness Month and one of the largest national fundraising events takes place this Sunday. It is the Great Strides Walk, which is taking place in over 200 cities this Saturday and Sunday, May 19-20. (Click to find out more about Great Strides, including walk locations.)

I will actually be walking twice! Last year when Drug Market Info was looking for CF patients to interview for our Cystic Fibrosis Market Info report, I contacted my good friend Sue (whom I hadn’t seen in years) but knew her daughter had CF. We ended up interviewing her and a number of her friends from western Massachusetts and were completely touched by their stories.

Our interviews with these patients and caregivers took place last November and they mentioned the Great Strides Walk to me. I promised them that I would be there and so here it is May and I am on my way to both Northampton and Shelburne Falls Mass. I will be supporting Team Paige and Audrey’s Angels.

I am so excited because I will be meeting some of the patients and mothers we interviewed that contributed so many insights to our Cystic Fibrosis Market Info report. I truly hope that the patients’ perspectives they shared will influence companies to either undertake further drug development on Cystic Fibrosis or take their needs into account. (You can get the facts on Cystic Fibrosis here.)

I am particularly excited to meet in person one of the patients we talked with that has had 2 lung transplants—she touched my heart and I can’t wait to meet her! When I asked her about her goals in life she said she didn’t have any. Her mother interjected that she doesn’t know how long she will live and doesn’t like to think about the future. Of course, I jumped in and said, “Why don’t you want to be the first person to have 3 lung transplants!” I am hoping that won’t have to happen and that she will thrive and be happy.

She did mention that she always wanted to go skydiving. Even though I want to make her happy… I am drawing the line at skydiving! However, I am going to take her zip lining and I am happy to report that Bob Coughlin (President of Mass BIO, read our Notes & Notable interview with Bob Coughlin) who has a son with CF is not as “chicken” as me and has graciously agreed to take her sky diving.

To all of you out there with CF and to those who love you, as well as all of the drug researchers trying to cure this disease—I salute you and will be proudly walking alongside of you on Sunday.

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Posted on May 18, 2012, in Cystic Fibrosis, Drug Market Info News, Patients' Perspective and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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