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People from NACFC (and a few other nuggets worth mentioning)

Thursday, December 1, 2016

I genuinely have not meant to stop blog posting as of recent.  I just can't seem to catch up.  Kids, holiday traveling and work projects have all had me preoccupied.  But there are so many good things to share!!

In my last blog post, I shared as much as I could about what I learned at NACFC in October.  But there are other things worth noting so I'm posting those thoughts/pictures here. 

First, let me share about the people at NACFC.  I certainly could not capture all of the people I love getting to see and meet at NACFC but here are just a few of those who I captured.  Above left is one of my best CF Mom friends, Erin.  Above right is my friend Chris, an adult with CF who, along with his wife, recently adopted one of the the cutest little babies I've ever seen.


Above left is Lou, a CF mom from Ireland, who I am still thrilled I ran in to on the streets of Orlando as we were both walking different ways to restaurants for dinner.  We were able to stop for 2 seconds and capture a picture.  We joke that we are related because both of our kids have the exact same CF mutations. :) Above right is Jerry Cahill, a CF adult hero in his own right.  He's one of the nicest guys and I was over the moon to meet him in person.  Bottom left is Sioban, a CF mom, who is an amazing mother and CF advocate.  I very much admire her and cherished the time we had to visit together at NACFC.  Bottom right is the C3N team from Cincinnati Children's Hospital that I work alongside with our work in the Learning Health Network. (Notice Michael, the goofball in black! ;))


This picture is from our "Parents Connect" Dinner at Opa Restaurant in Orlando sponsored by Allergan.  It was the first of it's kind and will hopefully be an annual event.  I met lots of great CF moms (and a few dads) who I either already had a connection to via social media or do now.


Above top is Peter and Ginger.  Peter is a CF dad with an English accent and powerhouse fundraiser for the CF Foundation.  He is a risk taker and is always doing something wild and crazy to raise money for CF.  Ginger is a passionate CF mom from Tennessee who is 100% southern.  Ginger will be the 2016 CFF's Volunteer Leadership Conference Chair in Dallas this Spring. Above bottom is Laurie, a CF mom from Vermont who I work with closely on the CF Foundation patient-driven initiative, Insight CF.

The picture above is the grassroots parent lunch at NACFC that came from a bunch of CF Moms who were already connected on Facebook but who wanted to meet in person.  This is our second year to get together but it was just as valuable as last year.  It's nice to be able to share what we are learning, what sessions we are exciting about attending and what tips we've learned that we are taking back home.

I must say these pictures, while fun to see, also makes me sad...because of those who cannot be in these photos.  One of the most tragic things about the North American Cystic Fibrosis Conference is that people with CF are not allowed to attend NACFC.  I understand the CF Foundation's infection control guidelines, that people with CF are a risk to other people with CF which is why they are not allowed to attend.  (I also know some people with CF come anyway.)  I greatly appreciate the way the CF Foundation is working each year to bring more and more of the conference online so everyone can participate, if at least virtually.  But there is no true substitute for in person connecting.  It makes me super sad, as a mother of a child with CF, that this conference cannot be something that the very people we are there for can experience.  It's so sad that CF even takes away the opportunity to be at a conference about one's life-saving treatments.  To think that, unless something changes, Bennett will not be able to attend this conference with me when he is an adult is very disappointing.  All the more reason we need a cure.

I was really excited this year to be a part of a team that had a poster accepted at NACFC.  For the last year or so, I've been working alongside some amazing people from the FDA and several pharmaceutical companies as a part of the Clinical Trials Transformation Initiative of the Duke Clinical Research Institute at Duke University.  The abstract that was accepted is called "Pediatric Trials in Antibacterial Drug Development: Findings from the Clinical Trials." I'm proud to be a parent sharing research at NACFC. Unfortunately, in order to share research at NACFC, you have to have a research organization, something most non-clinicians like parents/patients don't have. With continued support from patient-driven research sponsored by the CF Foundation through the Insight CF Registry Research Project, I am hopeful that, over time, there will be more opportunities and platforms for patients and families to share their knowledge and research with the CF research community. People with CF and their families are increasingly being acknowledged as experts in the field. But, as of now, there are few opportunities to demonstrate that research at medical conferences such as NACFC. I'm hoping that change is coming.



Kate's Farms was a huge buzz at NACFC and while it may be coming to a CF Clinic near you, the reality is patients/families have been demanding "real food" enteral nutrition for a while now.  There is a very big push in the CF community (and, in the general g-tube community) for better enteral nutrition options.  Kate's Farms was the only "dairy-free, gluten-free, soy-free, non-GMO" food enteral vendor that I knew of at NACFC and received very good interest from those who visited.  The other companies I know that offers something similar is Liquid Hope and Real Food Blends.  Although they weren't there, I know the CF community has been asking for more holistic nourishment support for their children who are being supplemented at night and during the day.  The desire is to see that children who are fed through a g-tube are getting similar types of wholesome foods as those who are not.  Personally, I think Kate's Farms signals the change in preference for a more balanced diet from the CF community.  I'm happy to say more and more docs are getting on board.

Another buzz at NACFC this year (that I actually saw last year but didn't post online as not to jeopardize the FDA approval process) was Relizorb, a new enzyme just approved for enteral feedings.  The way that it works is you place one end of the cartridge into the tubing and put the enzyme into the tube extension so that the formula goes through the enzymes as it goes in to the belly.  This product rocks my world!  Not only is it supposed to be more effective than other enzymes for tube feeds (we're still determining if that's true for Bennett), it is SO easy to use and negates having to crush enzymes or wake Bennett up to take enzymes by mouth.  Bennett has been trialing Relizorb for the last few weeks and Brian and I love it.  We are still trying to figure out what is the best formula to put with it since fiber in a formula can clog the cartridge, but other than that, we're huge fans of this new enzyme method.  Improving the treatment burden is huge and I can say Relizorb does that!

This is me and Lisa.  She's a CF doc.  I'm a CF mom.  We met on Twitter.  Throughout NACFC, we were both tweeting our respective experiences at the conference.  But, as Twitter often does when you're passionately tweeting about a topic, it connected us together.  I was delighted to see such an active CF doc on Twitter sharing good information.  She was delighted to see an equally active mom in the Twittersphere.  So, we decided to do a "Tweet-up" and met up with each other in real life!  Lisa and I both believe Twitter is such a great resource for the sharing of good ideas and information, particularly for the larger CF community since so many of us are dispersed around the nation and can't get together.  We hope to work together on this topic in the future: improving CF care through the connection and collaboration of social media.

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