27 February 2012

CF Foundation Conference, Part 1

I met him! I really really met him! And he was gracious enough to let me take a picture with him!

This is Bob Beall.  He is the CEO and President of the Cystic Fibrosis Foundation (CFF) and has been for the last 30 years.  Bob is revered as the CF community's fearless leader who has been integral to making seriously significant headway for finding a cure.  No one will quite understand the love CF Mamas have for Bob.  But we love Bob!!!

I met Bob briefly last week as I had the opportunity to attend the Cystic Fibrosis Foundation's Volunteer Leadership Conference in Bethesda, Maryland.  I wasn't quite sure what I was getting myself in to but I am so very glad I went!

This is a picture of the beginning event.  There were about 500 people there total.  Half of those were staff members who were attending the conference as a part of their CFF staff conference.  The other half were parents/family members/friends of those with CF - people who are serious and dedicated to raising money for a cure.  I had no idea how infectious these people could be! 

This year's conference was run by two wonderful co-chairs, a husband and wife duo, named Perry and Kelli Clark, whom I had the privilege of meeting.  (I wish I had had my big camera so I could have taken better photographs but I needed something small enough for the purse.) They are the parents of three boys.  Their youngest, Wells, has CF.  Kelli is a spunky mama-bear who strikes me as someone who will get things done to save her son, but always in the most gracious way possible and with a smile.  She's the kind of CF Mama I want to be! 

These are just some of the people at the conference.  Many of them were honored with awards for their dedication.  These are people who encourage me to keep fighting, even as I get tired of the day in, day out effort it takes to keep Bennett healthy.  If they can do it, so can I.

The conference was educational, inspiring, fun and emotional.  Moving videos like this one were shown from time to time over the course of the conference.  Hearing a mom talk about how her son asked her if he will have to do CF treatments in heaven left not a dry eye in the place.

Dr. Preston Campbell, a very talented Pediatric doctor from John Hopkins gave us a "State of Science" Update, which was awesome.  It's true, I had to tell myself while listening to him, we seriously are very close to being able to manage this disease...not a cure, but something almost as good.

This is just one of the many slides that Dr. Campbell showed.  He talked about the progress of the newest CF drug currently in trials.  We don't know if VX-809 is going to work.  Dr. Campbell said there is a 50/50 chance.  But we should know the results late this summer or in September.  More was said but I'll put up another post for that one.

My tag.  I'm a official.  In this CFF thing for life.

This is a bad picture but I had to take it.  Only at a CF function would you find little bottles of hand sanitizer sprinkled about the table, next to the platter of fruit and chocolate covered strawberries.

I was so excited to meet Casey and Holly Liles.  Holly and I grew up minutes away from each other but never knew each other until our sons were diagnosed with CF.  While we have a common friend, we actually became friends over Facebook through the CF Community there.  We won't ever be able to get our little boys together to play but we certainly can stay in touch via the internet and through opportunities like this. 

This is Amy, the person I work with most with regards to our Great Strides event.  Amy works at the CF Foundation and works tirelessly to raise money for a cure.  But this isn't just her job.  Her son James, a young adult, battles Cystic Fibrosis, too.

And this is my new friend Kara.  She happened to be on Facebook one evening after our event updating the CF community on what we had learned at the Conference.  Because I meet so few mamas that I speak to online, I asked if we could hook up at some point.  Turns out, we were at the same session the next day.  Kara has two young sons, just like me.  The oldest, 4, doesn't have CF.  The youngest, 2, does.  So glad to meet another Mama fighting for her baby! 

Oh! And there is one more thing...a surprise announcement coming from the CF Foundation about a new logo.  It will be our first logo change in 55 years!  I won't spoil the surprise but I will share a picture of the new corporate campaign logo the Foundation is working on:

More about the VLC Conference, coming soon!...

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