Tuesday, July 31, 2012

CFRI Conference

Over the weekend I was able to attend the annual Cystic Fibrosis Research Inc conference.  This conference is really geared towards those in the CF community and not the researches/scientists/medical professionals specializing in CF.  It is a great opportunity to learn about new information, get new ideas about care, and networking.  Here are ten things I learned or experienced at the conference.

1. I learned a great deal about the research Vertex has accomplished with developing new medications for those with CF. They continue to research medications that fight the underlying cause of CF, a whole new approach to managing the disease.  Good things continue to be in the works for this, so it was exciting to hear about the continued efforts.

2. Post Traumatic Stress Disorder is a real life condition for those battling CF or any chronic illness.  I was happy to hear about information on this disorder and how to get help.

3. There was a great presentation on managing CF as an adult. A lot of the information provided was really about being organized.  It gave me some new ideas for clinic, including leaving clinic with a written plan for the next three months.  There was a standard form developed by one clinic that had a place to record all the information information at a clinic visit.  I am thinking about developing my own form to use during each visit.

4.  I learned about an inspiring book called The Breathing Room.  It was a book developed by a CF patient that is a collection of pictures, poems, and biographies of numerous CF patients.  You can learn more about the book at http://www.thebreathingroom.org/

5. I met three older CFers at the conference.  They were 59, 65, and 68.  It is hard to find older CFers and it is really interesting to hear their stories.

6. I attended my first CF support group.  This was a very valuable part of the conference to speak with others living with CF. I have often though I could benefit from this type of communication, but I don't really have anything like this in my area.

7.  There is a really cool website call the Clinical and Functional Translation of CFTR.  It is a website in which you can look up for CF mutations and look at statistics about your mutation combination such at average sweat chloride, lung function, pancreatic status and pseudomonas infection rates.   http://www.cftr2.org/

8. I learned about a new resource call CF Roundtable.  This is a publication specially for adults living with CF.  http://www.cfroundtable.com/

9. The networking of a conference like this is has so much value.  I was able to catch up with old friends and meet some new ones too.  It is so helpful to meet people living with CF...it is like an instant bond or connection.  Luckily we have facebook to stay in touch too!

10.  CFRI is an amazing organization. I am thankful for all they do.  The conference is a special and unique experience.  I feel lucky it takes place so close to home.  One of these days I need to make it to the CFRI retreat!

1 comment:

  1. Sounds like you had a great time and I'm so happy that you were able to attend!