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Join FamilyCon -The CF Virtual Event

By Mark Tremblay

For those of you who don’t know FamilyCon which is being held this year on Thursday,

June 18 from 7-11 PM Eastern Daylight Time and Saturday, June 20 from 2-10 PM EDT

is a free online two-day event that will provide a space for people with CF, their families

and friends to connect virtually and share their experiences of living with CF and loving

the people who are in it with them. Attendees will have the opportunity to learn from

others and discuss aspects unique to life with CF through keynotes, panel discussions,

group chats, story hour, and more.

This year’s key themes are mental emotional wellness and the power of resilience. The

following are just some of the topics:

 Communicating with family and friends about CF

 The power of patient and family advisory councils

 How to keep CF from taking over family

 Empowering independence as CF parent or caregiver

 Finding independence as person with CF

 Being a partner or spouse of someone with CF

 Supporting my CF sibling while maintaining a sense of self

 Effective communication with your care team

 Being real with your partner about CF

 CF transplant journey

 Learning your rights in the workplace

During this pandemic many of us, myself included, are experiencing a shrinking social

and emotional support network so that only a handful of our closest family, friends, and

loved ones remain. Since we have to rely more heavily on fewer people this is a perfect

time to deepen our understanding, transparency, and empathy with those in our family

whom we love and share our lives with. There is no single definition of “family,” and

when you're living with cystic fibrosis, family can mean many different things: immediate

family, extended family, loved ones, or friends who with you and for you. No matter what

your family looks like or who you consider being family, you can find support and

connection at CF FamilyCon 2020.


About the author: Mark Tremblay was diagnosed with CF at 18 months, is 51 years old, and lives in Albany, NY, with his wife MaryGrace and stepson. He has a MA in Psychology (Marywood Univ.), MPA (Syracuse Univ.), worked 6 years in the NY Governor’s Div. of Budget, and presently works full-time at the Dept. of Health. He was one of the first researchers in the country to study psychological adjustment in CF adults (presented at 1999 American Thoracic Society International Conference) and writes a column, “CF: The Mind Game”, for the CF Roundtable. Additionally, he is President of “Vests fOr Life” which collects and distributes unneeded therapy vests and oxygen saturators to CF patients around the world. Catch him on YouTube or Facebook at “Breathing Grace

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