Our mission is to offer supportive resources to the spouses and partners of those with Cystic Fibrosis, while continuing to advocate and raise awareness for the Cystic Fibrosis community.
With the great strides that have been made in the treatment of Cystic Fibrosis (CF), people with CF are living far beyond the previously predicted life expectancy and well into adulthood. Because of these advancements, more and more people in the CF community are dating, getting married and starting families.
CF is considered an orphan illness and as a result, the awareness is not as great as it is for other more common illnesses. This is part of the problem that Project CF Spouse aims to address. As the CF population matures, many more of them are meeting people, dating them and eventually getting married. Unfortunately, their future spouses have very limited resources that provide any quality information on what the life of being married to someone with CF is like. Looking on the internet for information about CF can be scary and overwhelming when you see things like “terminal illness” and “shortened life expectancy”, especially when those words are being used to describe someone you love.
Project CF Spouse is a non-profit organization dedicated to educating and supporting spouses and partners of those with CF. This community will offer education and resources, in addition to the personal life experiences gleaned from the other members.
To have people who understand what the day to day realities of living with and loving someone with CF is immeasurable. The hope of us at Project CF Spouse is that this organization can be a place for all spouses and partners in the CF world to come and that it will provide the resources needed to help them better navigate their journey with their CF loved one.