The Vision for BreatheCon 2020
A message from the co-chairs

Dear Planning Team,

Welcome and thank you for joining us in the planning of BreathCon 2020!!

We are so excited to have you all and can’t wait to share all of our unique and important stories of living life with CF. This is, of course, a very interesting time in history to be getting together, now that the rest of the world understands the many infection control precautions and physical distancing that we as adults with CF have been doing for years!

On a serious note, the COVID-19 pandemic has been a major stressor for our community in ways that only other CFers can understand. So let’s take this time to be kind to ourselves and celebrate the power of community and connection; get real and honest about the good, bad, and everything in between of living with CF; and be open to building new relationships and new possibilities.

For this year’s BreatheCon there are a few topics we would like to highlight:

  • Diversity and Inclusion -- When the CF gene was discovered in 1989, CF was considered a fatal pediatric illness that affected majority white patients. Today, and every day moving forward, the faces of CF look more and more different and each of our individual experiences of CF become more and more divergent, especially in the advent of modulator therapy. While the entire world continues to grapple with the systems and institutions of our societies that encourage racism and anti-blackness, it’s crucial that our community take this time to amplify the voices of historically marginalized people. As long as racism exists, we all must continue to work on building inclusive spaces that celebrate differences among us and fight against health disparities that affect the most vulnerable of our community. Now more than ever, it is important to foster a community where all feel welcome and differences build bridges rather than walls.
  • Storytelling -- As we stated earlier, each life with CF is so different from the other. Stories and the nuances of each experience, however, can be the most powerful tool for sharing insights and building connections. This year we want to really encourage people to share their stories and be compelled to learn from one another. But, most importantly, we want to allow space for stories to take shape through honesty and empathetic listening. The best stories are those told and heard from the heart.
  • Mental Health and Healing -- Alongside physical fatigue, living with a chronic condition is mentally and emotionally exhausting and can heighten or amplify pre-existing mental health struggles for many of us. We want to make space to talk openly about the different ways each of us has sought to integrate better mental health and healing as a part of our CF care. As a community, we are well-versed in some of the basic mental health needs, but let’s get into the nitty-gritty, share our stories, explore what works for some and what doesn’t work for others, and bring insight to what healing can look like on a day-to-day basis.
  • More than our CF -- We are more than our CF and we can/should be more to each other. This year’s Breathecon, we want to provide opportunities for adults with CF to connect on shared interests and identities so we have a chance to see eachother beyond just our similar diagnosis.

Thank you again for joining us, we are looking forward to getting to know you and making BreatheCon 2020 the best it can be!


Tannaz and Kasey

photo of Tannaz Motevalli
Tannaz Motevalli
photo of Kasey Raffensperger
Kasey Raffensperger
Ready to help plan?
Register to join the work group and the kick-off call. On our first call you'll learn more about the event goals and how you will help bring the co-chair's vision to life. In addition, we'll get to know each other and dive into brainstorming this year's event!
Even if you can't attend the kick-off call, please register to ensure you receive follow-up information!
Just interested in facilitating?
No need to register for the call. You will receive an email when facilitator sign-up opens around Aug. 20.
Questions? Please email

Countdown to BreatheCon 2020