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Volunteer Advocate
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The vital impact of research on a community and personal level

Guest post by Miriam Schroeder, CF community member

Dr. Valerie Chappe, Associate Professor in the Department of Physiology and Biophysics at Dalhousie University, does groundbreaking research on the CFTR gene for cystic fibrosis (CF) as well as neuropeptide VIP in respiratory health and diseases along with ion channels, drug discovery and CF epidemiology in Atlantic Canada. She recently sat down with me for a live stream interview in order for people to better understand the workings behind medical research.

My first impression of Dr. Chappe was that she was incredibly passionate about her work, and she had the impression from me that I was very resilient, wanting to live well regardless of this disease. We discussed the importance of both medical research and being able to maintain one’s health while waiting for new results. She was very pleased to hear how greatly I take care of my overall health with organic foods, exercise, and more. We both agreed that beating CF requires a unified effort and responsibility in the world of science, patient personal care as well as a wider community understanding. Dr. Chappe was also highly impressed with the sorts of questions that I had chosen to ask during the livestream. She was so happy to see someone with this illness who is so hyper aware of certain medical sides of understanding.

I think social media also has a great deal to do with aiding in the broader understanding of cystic fibrosis. In our day and age, online mediums such as Facebook and Instagram all help to unite people and bring a sense of solidarity in the battle against this disease. I know that over the years, my hospital admissions have been more manageable due to being able to connect with other CFers and those closest to me. It helps in letting me know the fight is not solo and allows people to stay up to date with research, events, stories, and fundraisers.

We also discussed how a disease can shape a human being. I mentioned that my disease had made me a certain way, that it gave me deeper insights into my life, it made me think of my life choices differently and that at a very young age, character builders such as patience, understanding, compassion, work ethic, respect, maturity, perseverance, discipline, faith, hope and commitment had all led me to be as stable as I am today with this condition. Especially when it came to understanding the frailty of the human body, that mortality was a very real thing, how CF made you eventually come face to face with it sooner or later, that every night you stepped on a battle ground and, in a way, so do researchers. They are in this fight with us, just as much as the patients are. The inspiration goes equally both ways and brings forth more determined and committed people such as Dr. Chappe, who has dedicated her life’s work to helping eradicate this condition through better scientific understanding, and people such as myself who refuse to give up on living with this illness and will continue to fight in order to live and breathe life into my future. It was a true honour and a humbling experience to have had this opportunity.

“I think it’s so important to find something for Cystic Fibrosis, this is why I am doing what I’m doing, to help.” –Dr. Chappe

“People such as yourself allow me to know that for every day that I fight to breathe, you’re also doing work to help me breathe.” –Miriam Schroeder

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