Thursday, October 8, 2015

Welcome to NACFC 2015

The North American Cystic Fibrosis Conference brings together thousands of brilliant scientists and clinicians to discuss their research, and ways to improve care in CF clinic.  As a CF Mom with a chemistry degree, I am drawn like a magnet. The conference is draining--physically, intellectually, and emotionally.  I subsist mostly on coffee, wine, and protein bars and don't sleep much.  I am a zombie by the time I get home, and my head spins for weeks on all the new information I have learned, and people I have met...and I wouldn't miss it for the world!  I even attended in 2012 on crutches after knee surgery.  It would take a natural disaster of some kind to keep me away.

This year, there is a new event piggybacked on the NACFC called the “Volunteer Engagement Conference (VEC), which will bring volunteers from the West together for scientific updates and Foundation news.  My husband and I arrived in Phoenix yesterday afternoon and attended a beautiful welcome reception for volunteers and Foundation leadership at the home of Robert and Carole Griego.  It is always really special to me when I get the chance to spend time with other CF families.  I’m excited to speak at the VEC this afternoon about the importance of prioritizing advocacy as we move through an evolving healthcare system toward personalized treatments for cystic fibrosis.   

As you can imagine, there is a mountain of new scientific information to digest every year.  I have every expectation that this year is going to BLOW MY MIND.  This morning, my plan is to attend the workshop entitled “New Advances in CF Animal Models.”  I’m going to send my husband Brock to the “Novel Targets and Outcome Measures” workshop to take notes and pictures.  I hope to have another post later today about what we learned.  After lunch, I will be speaking at the Volunteer Engagement Conference alongside Mary Dwight and Abi Green from the Foundation, and my National Advocacy co-chair Melissa Shiffman.

This afternoon, I will be attending a symposium-- “Partnering with Patients and Families to Promote Healthy Lifestyles,” which will feature discussion about exercise, alternative therapies, anxiety management, and wellness through diet.  After that, we will attend the first Plenary session—“Personalized Medicine,” where several speakers will discuss the process of tailoring the care and drug regimen to the needs/mutations of each individual patient.   

It is such an awesome feeling to sit in the huge room where the Plenary sessions are held--surrounded by 4000+ professionals who all care deeply about curing CF.  It is like being transported to another planet where, fortunately, I speak the same language as the natives.  

I’m a little nervous about my knee brace/high heel combo, so hopefully I don’t take a nose dive down the escalator! Barring disaster, I will be blogging to the best of my ability again this year.  Stay tuned for updates!