We’re Warriors So Fighting On Is Just What We Do
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August. We were exhausted and happy after a successful exhibit at the Rheumatology Nurses Society annual meeting. Five minutes later, I realized I was still buried in Rheumatoid Patient Foundation (RPF) projects preparations for the RPF’s next exhibit at the American College of Rheumatology Scientific Meeting in Washington, D.C. in November.
And, then the hard drive crash. And the failed restore. And weeks of spending all day trying to get back every email, video, and PowerPoint presentation.
Decision. Continue with plans to D.C. for a week? I decided yes.
Of course, I had no idea it would be SIX WEEKS before I would be able to get any work done. Still… no regrets!
In D. C. The pictures tell much of the story. Enjoy the slide show! And here are two important highlights of our week:
Blue Button summit
The Blue Button method for patients to access their health records was first used with veterans. (See Blue Button video testimonials.) And recently others in the health care industry have signed on such as United Health Care and Walgreen’s. The purpose of the September summit was to explore ways to expand consumer access to health information. We had a wonderful day full of opportunities to learn and share with people who care.
I found a portion of the of the Blue Button Summit on video here. “Dr. Farzad Mostashari, National Coordinator for Health IT, ONC, and Lygeia Ricciardi, Acting Director, Office of Consumer eHealth, Office of the National Coordinator for Health Information Technology, HHS.”
Since we were going to D.C. already, we had set up meetings with several Congressional offices to share about the concerns of people with Rheumatoid Disease. They appreciated our message and agreed that there is much work to be done on behalf of RA patients. It was a great start for RPF thanks to some people who were also very generous with their time and advice for the RPF.
Back so soon?
Yes! My son and I will be attending a PCORI meeting next weekend in D.C. I know I’ll be sitting for literally 90% of the time, but it will still be tough to travel with such a quick turnaround. Obviously, I think this is very important. I’m only participating where I believe I can make a difference.
Note: a photo gallery is one of the things I’ve wanted to add to the site for years. This week I’ve created a more few albums, so look for GALLERY on the top menu any day now!
- What If Rheumatoid Disease Were Recognized, Properly Funded & Medically Understood?
- My Impressions About the FDA Hearings on Social Media #FDASM
- 20 Tips for Managing Your Rheumatoid Arthritis Treatment
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