CFRI Conference

Two weekends ago I had the greatest privilege of attending the 25th Annual CFRI Conference in San Francisco, California. I went as a representative of my CF care centers Patient and Family Advisory Committee.

This years conference was titled; 'Facing CF Together with Confidence: Connecting Families, Care Teams and Scientists.' The conference is such a valuable opportunity for which I am beyond grateful to have had. It brings people together to share the latest information about CF treatment, research and services. Speakers come from across the country and from Canada to update us on clinical developments, ongoing research, and new directions for CF care.

I have to admit I was a bit terrified to attend. I was unsure how I might react to information that was less than favorable. That I would be an emotional wreak, unable to put an intelligent sentence together and thus unapproachable. But I surprised myself. I held it together, well, most of the time. I spoke with people from all different walks of life, each connected to CF in a different way. Some were parents striving to understand how best to help their child. Some were CF patients who were attending for multiple reasons; networking, getting the last information and simply to connect with those battling this disease along side them. Some were researchers, scientists and physicians all trying to find a why to help us, to give us a better chance at survival, to help cure this devastating disease.

I traveled alone this year and was hesitant to begin the first conversation upon arrival. I didn't want to offend anyone, I didn't want to be intrusive and mostly didn't want to seem over zealous or needy. There were many booths from many different companies who service CF care. I began by going to each booth, learning about their products and getting tons of awesome free stuff.

I attended the orientation meeting and met some friends, in fact, from orientation we went out to "network" at which point I meet more folks. The relationships formed almost instantly. There is an unspoken understanding. No need to example anything. Support in the form I have never known. Ever. I get weepy just writing that.

Probably the most amazing part for me is that I was one of the youngest CF'ers in attendance. Many are in their 40's, 50's and late 60's. I have heard of these people, these mythical beings who are some how living into old age, but never have I had the pleasure of laying eyes on them. Probably one of the most inspiring moments in my life. Seeing these people who are my grandmothers age living and thriving with CF. LIVING and THRIVING. This changes the game for me. Seeing with my very eyes that this could be me. ME. OLD. GRAY HAIR.  Now, I am sure that as your reading this your thinking; yes, Kari, that could be you, why would you think anything else? Because I have meet more people who have died than I have who are reaching 40+ years. Because this disease is still consuming young people at unacceptable rates. Because the medical community and research community are working day and night to slow the progression and find a cure. So, for me to witness this. To meet them. To speak with them is beyond motivational. It is beyond hope.

I am thrilled to be part of this community. I hate the suffering CF imposes but the people who are facing this battle with me are truly remarkable.

I attended a few sessions that different speakers were touching on and two have changed my life. No two ways about that; changed it forever. I am still wrapping my head and heart around the information and will share when I can put the thoughts into a comprehendible post.

~Doodlin'