Wednesday, March 23, 2011

I've been invited!!

UPDATE!!! I got a call from the CFF office yesterday, saying that they had been invited to attend the symposium and were asked to bring a few parents & caregivers with them to listen in for the day...and they wanted to know if I was interested in attending!! So I've officially been invited, and I can't wait to go!

Okay, well technically not really. But I can go if I want! To what you ask? To the Thomas Boat Research Symposium on Cystic Fibrosis. I have a dear friend who works at Children's and she forwarded a note to me that she received about this event. Here's what the body of the email said:
Please join the Division of Pulmonary Medicine for a day of scientific discovery and celebration. The symposium will feature scientific breakthroughs in the field of Cystic Fibrosis led by researchers throughout the country and at Cincinnati Children’s. We will also celebrate the establishment of the Thomas Boat Chair in Pulmonary Medicine and the appointment of Dr. John Clancy to the chair.
Now let me explain what that all means. These doctors - Thomas Boat and John Clancy - are some big time Cystic Fibrosis doctors and researchers. Dr. Boat, though I've never met him, has a reputation as a pioneer in the care for and treatment of cystic fibrosis patients. Dr. Clancy has been called the lead Cystic Fibrosis researcher in the country. AND THEY ARE BOTH IN CINCINNATI! So I get this email from my friend and I think about how awesome it would be to meet them and hear them speak. And I open the email attachment and I see that its more than just those two amazing doctors that are going to be there, but rather the best of the best from around the country!! All of these doctors and researchers, all in one place, and I have access?! Get out of town! Here's a peek at the agenda:
10:00 am Welcome and Introduction
Raouf S. Amin, MD
Director, Division of Pulmonary Medicine
10:15 am Cystic Fibrosis Science at Cincinnati Children’s
Arnold Strauss, MD
Director, Cincinnati Children’s Research Foundation

10:25 am Cystic Fibrosis Progress
Thomas Boat, MD
Executive Associate Dean, University of Cincinnati College of Medicine
CEO, University of Cincinnati Physicians

10:55 am The Network Development of Cystic Fibrosis Basic and
Clinic Science: The Role of the Foundation
Robert J. Beall, PhD
President and CEO, Cystic Fibrosis Foundation

11:35 am Breakthrough in Animal Models of Cystic Fibrosis Disease
Michael Welsh, MD
Director, University of Iowa Cystic Fibrosis Research Center

1:20 pm New Paradigms of Inflammation in Cystic Fibrosis
Christopher Karp, MD, PhD
Director, Cincinnati Children’s Cystic Fibrosis Foundation

2:00 pm Bringing Quality Improvement to Cystic Fibrosis Clinical
Care and Applying to Clinical Research
Gerald T. O’Connor, PhD, ScD
Professor, Medicine and Health Policy and Clinical Practice at
Dartmouth University

2:50 pm The Realities of Cystic Fibrosis Disease, Current and Future Targets
Michael Konstan, MD
Professor and Chairman of Pediatrics, Case Western Reserve University
School of Medicine, Rainbow Babies and Children’s Hospital

3:30 pm Cystic Fibrosis Modulators – Are They Enough?
John Paul Clancy, MD
Director, Clinical and Translational Research, Cincinnati Children’s
I emailed one of our doctors, Lisa Burns. She's a fellow and she is awesome. After I saw the agenda I thought to myself, "I wonder if this is for parents" as I hadn't received an invite, I had been forwarded an invite...from a clinician at Children's. Lisa emailed me back shortly thereafter and said that she would check and see. Dr. Amin (our August 2010 hero of the month for the discovery of the aorta compressing the trachea which lead to Drew's heart surgery that helped him so very much) responded that patients and families were not invited to the symposium because it was directed more towards clinicians and scientists, but he also said that I welcome to come if I wanted. YES! I want to! There is my official invitation!

Martin thinks its weird. I guess it might be a little weird if I'm the only non-doctor/nurse/dietician/specialist there, but to be perfectly honest with you, I am a specialist on the subject as I deal with Cystic Fibrosis 24 hours a day, 7 days a week. These doctors get to go home at the end of their patient-checking, researching days. I have to sit at dinner and administer enzymes before Drew eats. After dinner, while the girls get to go play with my husband, I have to sit with Drew to give him his Pulmozyme and Pulmicort and Tobi while his Vest shakes the crap out him...all while watching the same episode of Sesame Street that I've seen 3 times a day for the last 6 months...not that i'm bitter. I have to spend my "free time" in the afternoons charting what he's eaten so I can consult the dietician on the frequency and texture of his poop. I swear, I don't mind doing it, I'm just ready for the cure to be found. I'm mad that CF has this kind of control over me. I'm an expert and I should have gotten invited to this symposium.

I understand why I wasn't though. Not all CF Parents are like me. Many are. Many many are. But in the past, when conferences have been organized and held to education and inform CF families, attendance has been low. And I understand why. Its hard to find the extra time when your child needs so much care and attention...and you have life going on in the background. Its the same thing with fundraising for Great Strides or the other CF Foundation events. Its hard to find that extra time and that extra money when medical bills mount and your time is spent between enjoying games of catch and building block towers in the living room to fielding calls from insurance and the pharmacy telling you that its not yet time to re-order the drug that you just ran out of.

But I'll be damned if its gonna get me down. I'll find the time. I'll make the time. I want to be in the know. Knowledge is power. CF is not our life. Its a very large part of our life and I do my best to keep it running the background. For me, thats the blessing and the curse of this disease. Everyone sees a healthy happy kid. But you're not here for the phone calls and the treatments and the doctors visits. And I'm happy about that because you all treat him the way I want you to treat him - just like anyone else. But I also want everyone to be able to see what really goes on, how really horrible this disease is. Not for my sake, but for Drew's. For all of those kids out there suffering from it. I want to go and listen to these doctors talk and ask my questions from an experts perspective. Sure, they might know more about the science and technology, but I will always know more about my son.

I'll ask Lisa when I see her in person next week if she thinks its weird that I want to go. If she says yes, I will wait for the next opportunity. Martin thinks its weird. I don't so much care if people think i'm weird. I don't want to overstep boundaries, but I'm curious. And I feel like if they really didn't want me there, they would have stopped with "parents aren't invited". We'll see what ends up happening.

I also learned today that the cousin of a friend of a friend (i know its a stretch) works for Gilead, the company responsible for Cayston! They are a sponsor of the Great Strides walk in Philadelphia. We haven't been on Cayston yet, and God-willing won't have to be, but it never hurts to have a connection in the business!


  1. I don't think its weird at all - Marty's weird (and feel free to tell him I said so!) Ha! But seriously, if it were for parents who delved in to their children's diseases, there wouldn't be the push for the research. You hit the nail on the head when you say you deal with this 24/7. You do know things - you may or may not know all the nitty gritty medical terminology, but you know that life with CF sucks. Your passion does, and will, fuel the research that will cure CF.

  2. GO! It's your son so it's definitely your business. When Landon was in the NICU after he was born, we went every morning to hear the doctors and residents do their rounds. It's a parent's right!