Red Feet, Frankenstorm, Unexpected Sympathy, and Travel to PCORI Workshop

Tags: , , ,

PCORI vertical bannerTiger and I left home for the PCORI conference today in D.C. in spite of the fact that many in the D.C. are evacuating from the area!

Schools were closed on the Space Coast due to Hurricane Sandy, dubbed #Frankenstorm. In Florida, Sandy wasn’t as big a deal as the half a dozen other hurricanes we’ve weathered, but the wind gusts were big and unpredictable so they couldn’t put kids in buses I suppose. A good call, we realized, when my Suburban was blown around on the Beachline on the way to the airport. But the flight got off on time as if Sandy didn’t exist.

A kind soldier gave up his window seat to Tiger since he hadn’t flown since he was a baby. He gasped the first time the plane dipped under the clouds and he saw the colored leaves of fall, “Leaves!”

We made it to the hotel in plenty of time, but sans hearing aid batteries. Not. Good. A CVS was only a couple of blocks away and the windy weather was beautiful. It was hard as a walk always is, but we had success.

Back inside the hotel, there was a short staircase. A woman approached me, watching me struggle, “Do you have a torn ACL?”

“No, I answered. It’s Rheumatoid disease.”

She said, “Oh, well that’s the same type of thing. Just as bad.”

Stunned, I agreed, “Yes, except that it’s all of my joints.”

“So true,” she added, “God bless you.”

This was something different. Different and wonderful. A good sign.

The picture of my feet shows how they looked while I rested for a while after walking – bright red.

red feet Rheumatoid disease

Next, I’m sharing some information from a PCORI email that will help you know why we’re here and why it’s important to our community. I’ll share more in the future about a certain PCORI grant I’m working on, but this weekend, you actually have an opportunity to observe and participate in the discussion.

Why are you there?

“The Patient-Centered Outcomes Research Institute (PCORI) is providing a free webcast for the plenary sessions of its patient engagement workshop, “Transforming Patient-Centered Research: Building Partnerships and Promising Models,” October 27-28. The workshop is designed to help PCORI build a patient-centered research community.

Workshop participants will help PCORI establish procedures for identifying research questions, reviewing research proposals for funding, and ensuring patient participation throughout the research process. It is the first in a series of workshops aimed at bringing PCORI’s vision for patient and stakeholder engagement to life.”

The workshop’s five topics:

  1. Identifying and Selecting Research Questions
  2. Reviewing Research Proposals for Funding
  3. Matching Patients and Stakeholders with Researchers
  4. Disseminating Research to the Community
  5. Evaluating PCORI’s Patient and Stakeholder Engagement Programs

How can we learn more?

To take part, you can:

1) Watch a live webcast of workshop plenary sessions:
Saturday, October 27, 8:30 a.m.-11:00 a.m. ET
Sunday, October 28, 8:00 a.m.-12:30 p.m. ET
2) Join the conversation on Twitter by following @PCORI and using the #PCORI hashtag during the workshop.
3) Provide feedback to PCORI on the workshop topics by email to Feedback received will be considered as PCORI develops a report on the workshop.

Recommended reading

NOTE: Your comments are an important resource for future readers of this post in the months to come. Please find the comment link below each post.

Click here to read all the comments or add yours!

Kelly Young. All rights reserved.

This entry was posted on Saturday, October 27th, 2012 at 4:55 am and is filed under Treating RA. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


The Post

Comments (5)

What do you think?

Would You Like Free Email Updates?
Stay in touch with RA Warrior.
We respect your privacy. Your email address will never be shared.