Sunday, October 28, 2012

A little bit about the NACFC for the CF newsletter

A few weeks ago my husband and I had the opportunity to attend the 2012 North American Cystic Fibrosis Conference in Orlando, Florida. Nearly 4,000 doctors, researchers and other clinicians from around the world came together to share their latest research and use one another to better their clinics and improve our lives.  

As you may know, Kalydeco was approved earlier this year.  Kalydeco is a breakthrough CF drug that has dramatically improved the outcomes for about 4% of CF patients.  At the conference, doctors and researchers explained their plans and the message was clear - they feel closer than ever to bringing life-changing breakthroughs to all CF patients.  There is still a lot of work to be done, but there were thousands of people at the conference who will not stop working until they have achieved that goal.  I heard determination from brilliant scientists to continue developing new therapies until 100% of the CF population can see benefit from them. There was confidence that a cure will be found. 

While the search for the cure was and continues to be the foremost goal in everyone's mind, there were dozens of sessions focused on making life better while we wait for that cure. These sessions covered topics from new and emerging therapies to infection control guidelines to understanding and improving adherence. I heard many talks about the vicious cycle of inflammation, infection and obstruction, in both the airways and the gut. I sat through session listening to all of the new and upcoming studies using social media to better connect either patients to other patients or patients to their doctors. There were people who had made it their mission to improve healthcare outside of the clinic by providing patients with a card that allowed clinicians who were less familiar with Cystic Fibrosis to properly care for them. Doctors and scientists presented cases both for and against the use of regular CT Scans in CF.  Respiratory therapists discussed what was working with the current neublizer systems and medications and how newer, more efficient machines and different forms of medications could help to alleviate the time burden already weighing heavily on people with Cystic Fibrosis.  There was a clinic that had streamlined the process for starting antibiotics once being admitted to the in-patient floor.  I heard about the latest studies of a new drug, VX-809, and how it will help people with the f508del mutation.

Even as we all wait for "the cure," it was clear that caregivers are working with new and existing therapies to improve outcomes today. Things are changing very fast, and nobody has all the answers.  Still, sitting through all the sessions, we got to see caregivers from across the country sharing stories and research results, to find those answers.  We also saw just how much of a role we all have to play in helping them.  Even the best doctors don't know as much about our kids as we do - they rely on our input to know what is working and what isn't.  If the burden of treatment is too much, or if treatments are causing more problems than they are solving, they need us to tell them.  If we have questions about medications or therapies, we need to speak up and ask. We need to work together with the medical professionals caring for our kids. They need us as much as we need them. 

It was such an honor for us to be able to attend this amazing event. It was inspiring to see how hard so many people are working to cure this disease. It encouraged us to continue being involved - working with our clinicians, participating in research studies, volunteering at fundraising events - as the results will directly benefit our son. 

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