May 30th was a great day for learning more about how we can meet the challenges that arise in life with CF. The weather cooperated (mostly) with a bright morning for check in and a warm afternoon for send off with a minor interruption for a light rain. The facilities at Lake Riley Lodge in Cobbs Hill Park were well suited for the program and the mix of weather. The elements combined to produced a pleasant environment for making and renewing friendships and exchanging valuable information.
We got off to a great start with a keynote address by Lynn Feenan, RN, MSN who serves the CF community in New Hampshire as Pediatric Pulmonary Clinical Nurse Specialist and a member of the Pediatric Cystic Fibrosis team at Dartmouth-Hitchcock Medical Center. Lynn’s presentation, entitled “Be the change,” dealt with the benefits of patient engagement in their health care and strategies for patient advocacy. Building on the knowledge that patient engagement contributes to the goals of health care (improved outcomes, quality, efficiency and effectiveness as well as decreased costs), she laid out ideas for patient advocacy at multiple levels. While you won’t get the richness of Lynn’s discussion of the topic, you can grasp the basic concepts by reviewing the slides that accompanied her talk: Be the change
The keynote was followed by brief updates by representatives from the Rochester CF Center. Dr. Clement Ren, Co-Director of the Pediatric CF Center, provided an overview of the encouraging developments in CF treatments and, in response to questions, insight into the clinical trial and treatment approval process. Donna Germuga, RT and coordinator at the Adult CF Center, reported that changes are underway in the Adult Center indicating that more information will be forthcoming as plans are finalized.
The general presentations were followed by another delicious lunch provided by Harry G’s New York Deli. The deli subs were generous and responsive to a wide variety of tastes, including specific dietary restrictions. We are pleased to continue the relationship with Harry G’s.
The afternoon gave the attendees the opportunity to participate in discussions on a variety of topics led by experts in their respective fields. Responses to our feedback survey indicate that the breakout sessions were relevant, informative and helpful. For more information on these sessions, check out the 2015 Education Day Breakout Sessions.
Let’s not forget the important role played by our sponsors. Beyond the financial support, the sponsors sent representatives who were available to discuss (and, in some cases, demonstrate) their products throughout the day. We certainly appreciated their patience during the “rain delay.” Please check out our Education Day 2015 Sponsors.
Survey responses also pointed to an important side benefit to the Education Day program. Following CFFC’s infection prevention protocols, we were able to provide a responsibly safeguarded environment for those living with CF to interact with their peers – an opportunity that is hard to replicate. We also heard from one parent that seeing thriving adult CFers gave her encouragement for her child’s future. These personal connections were the icing on the cake!
We’re looking forward to offering another successful CF Education Day in 2016!