I’m on a small airplane, somewhere over Indiana or Ohio, Coldplay’s “Don’t Panic” is playing in my earbuds. I’m looking down on my life from 30,000 feet, as I feel I have been for the past month and a half. I’m finally on my way home. When I last had the chance to write, I was in an entirely different place than I am today. We deeply enjoyed our last days as Cincinnatian’s, packed our things, and went on our way. Hershey, PA was our ultimate destination, and I knew so very little of how winding that journey home would be or how much I would learn on my way there. From Cincinnati, we visited ..read more

If you’ve spent any time reading my writing in the past, or living as my neighbor, or being Facebook or Twitter friends with me, you know that I’m rarely at a loss for words. I have lots of thoughts and feelings, more than enough opinions, and passion that runs through me like a river. After Drew was diagnosed with CF back in 2010, I remember looking at my husband and saying to him, “I don’t know what to say. I don’t know how to tell people.” Now that we are moving, it’s not that I don’t know what to say, but rather that I don’t know how to start or finish. I met my husband at a bar, or rathe ..read more

Rather than using the Patient Registry data to recognize if your CF care center is above or below "average" on outcome measures like lung function, check out what's possible! Below is the data from 2015. These are the average lung function numbers at the Pediatric CF Care Centers across the US available on the CFF website. Why strive for "average" when you can see what's possible! The range of average lung function from accredited CF Care Center to accredited CF care center spans from 105.8 to 76.8. Tri-Services Military Cystic Fibrosis Center has an average lung function of 105.8, while West ..read more

I wish I could dedicate all of my time to writing because it's the best way for me to relax. In my head I carry 1,000 thoughts that I regularly wish to share, but in the craziness of everyday life I can't seem to find the time to sit down and write it out. I want to get better about scheduling time to do this. March was a crazy month for me. I've started to work with the FDA's Pediatric Advisory Committee in the Office of Pediatric Therapeutics. It's not a job job, just an advisory role that requires minimal time, but I did have to travel to DC for a meeting at the beginning of the month. It ..read more

The Cystic Fibrosis Foundation has been a driving force behind research on therapeutics to increase longevity. It has a well-developed national Care Center Network, a transparent patient data registry, and long-standing quality improvement (QI) infrastructure. There are dozens of initiatives and thousands of people working tirelessly in the fight against this disease. Together, these assets have created a solid foundation on which to build a system to achieve transformative outcomes. However, recent data suggest that progress has plateaued within the current CF care system: The CF mortality ..read more

It's been a while since I've found the time to write a blog post. I'm writing for Eli Lilly now, and you can check out some of those posts here --->  https://lillypad.lilly.com/?auth=76 I find a lot of the content I'm sharing over there to be stuff that I would also share on here, so no sense in duplicating! We decorated for Christmas the day after Thanksgiving, marking the start of my most favorite holiday and time of the year. Christmas music is being piped throughout the house (and car and headphones) and reflections of the past year have inevitably begun. We had a tough go fo ..read more

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This post originally appeared on LillyPad, a blog for Eli Lilly Pharmaceuticals, where I write as an ePatient Advisor Editors Note: Over the next few weeks we will spend some time listening to the stories of some ePatients who have been collaborating together on ways to show the value and importance of patients as partners, collaboration for improvement, and connection & learning through “the network” for healthcare improvement. It’s important that these stories be told beyond our Google Hangouts or private Facebook groups or dinner tables and pushed more deeply into prominent places in o ..read more

We all have the unique opportunity to see the world from a different vantage point. I, as the mother of a child with CF, first saw this community as one of fundraisers, patients and families with an endless hope for a cure, working tirelessly to make connections and fund research to cure this disease. The more I got to know these folks, I started to see teachers and fathers and technologists and marketers and musicians and policymakers. I got to know the care team that was helping me to care for my son, and I realized that they were also soccer moms and artists and advocates, quality improveme ..read more

"We don't seek the painful experiences that hue our identity, but we seek our identity in the wake of painful experiences." I don't know where this quote came from, only that I find so much truth in it. If whoever wrote it happens to read this, raise your hand so I can learn more from you. Cystic Fibrosis sucks so bad. You can't usually see it, yet it forces you to act - restraining your kid for necessary blood work to make sure the medication we're taking to save his lungs isn't killing his liver. Childhood playtime after school is stolen from us as we sit for hours doing breathing treatmen ..read more