We Must Celebrate! Your Voice Was Heard, Despite My Limitations

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RPF team on set-up day at ACR13Months – actually years – of my life went into the last couple of weeks. It’s a peculiar feeling when it all comes together in a moment. While there are important points to dig into from the annual ACR meeting, we should pause for a moment to reflect on where we are. (A recent Spear newsletter relates to this also – subscribe here.)

A non-strategy approach

Someone thanked me for providing “vision & energy,” but I work late and miss sleep… my joints might describe it differently. I doubt I could explain what I do, and I seldom try. Some of my friends are trained in marketing and we joke about my non-marketing non-strategies like survival of the tiredest and my best will just have to do.

I only talk about a fraction of what I’m working on. The main reason is I’m too busy trying to do it to talk about it. Yes, I realize that breaks every rule of professional communication – and common sense.

The second reason is theft. I cannot begin to describe what has been stolen and how much money others have made from my (volunteer) work. Hopefully, minding my own business makes it a little more difficult for them. By the way, there are frequent offers for me to sell out by putting certain text and links on this blog. See the Disclaimer page for the simple way things work on RAW.

Rheumatoid Patient Foundation (RPF) exhibit at ACR13Make no mistake: the work of RAW has succeeded, in spite of my lack of marketing skill, because the truth is told with compassion, but without sugarcoating. There was a need for someone to say things that had not been said – that’s why people write me to say “now I know I’m not crazy.”

And the work of RPF (Rheumatoid Patient Foundation) has gained traction so quickly because people with Rheumatoid Disease (PRD) have a need to be represented, the same way others are, so we can address the one to twelve ratio of per-patient funding of research (compared to similar diseases).

Journalistic handicap

As usual, I barely came home with any photos from ACR except those we took in the cab the first day and in the plane on the way back. I’ve always been terrible at blogging and traveling or tweeting and traveling… I barely travel and travel. Fortunately others took lots of pictures – and tweeted!

What do the abstracts and the session have to do with you?

It might be hard to imagine what flying to San Diego presenting posters and slides has to do with the pain and problems of PRD around the world. Struggling to get dressed, walk the dog, or get the right meds, San Diego seems pretty far away.

~ It’s true the American College of Rheumatology is a professional organization.
~ It’s true some discussions of molecular biology at the ACR annual meeting go over my head. (But not so much for Katie Beth any more – after years of bio and chemistry!)
~ And, it’s true we didn’t bring home a cure…

So what did we accomplish?

8 YEARS IN A NUTSHELL [or "The back story on what I did last week”]

Kelly Young at podium at ACR13 speaking on Engaging Patients as PartnersDr Riggs speaking at session at ACR13




The Session

Last December, I proposed a session with three speakers from RPF: Dr. Jeffrey Curtis (a young hotshot award-winning rheumatologist), Dr. Elizabeth Riggs (a fabulous veteran PRD with an amazing resume), and myself (ordinary patient telling other patients’ stories). After some negotiating, I learned we were allotted one hour to divide between us. We were thrilled, but I kept all that to myself as usual… Hopefully, I’ll have some video to share soon, but I assure you all three of us advocated for better engagement and care for you.

RD experience poster team at ACR13The Posters

Last spring, I emailed a small group of talented, enthusiastic volunteers that became an RPF research-working group. Our work began with what I had learned from years of listening to you, but each person on our team provided expertise in presenting the significance of YOUR responses to questionnaires. (I wouldn’t have done it without them, and couldn’t have done it without you!) When you click here to see the two posters we presented, and read the authors’ names, know that each one volunteered his or her time to make it happen. And, again, I couldn’t talk about it… in this case it was actually embargoed material.

HAQ poster - RPF team members at ACR13

discussing RPF posters at ACR13

busy poster session for RPF at ACR13

RPF research is still at its beginning, but don’t lose sight of what just happened. YOUR VOICE WAS HEARD – like the Who’s in Whoville. Significant and overlooked aspects of RD were presented at the world’s largest venue for rheumatology research. We should all celebrate.


happy Kelly at door after ACR13



POSTBLOG: Yes, I was in pain, but why am I so happy in this photo?

Why do Katie Beth and I stay at the ACR venue until everything is taken down and everyone else has left? Why am I the last to leave?

I don’t want to miss a single second or a single opportunity. It’s obvious the work is not done. So much more is needed for patients.

There’ll be more pictures and lots of info soon.

empty RPF exhibit end ACR13

Recommended reading

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This entry was posted on Monday, November 4th, 2013 at 4:44 am and is filed under Communication and Inspiration, Special Occasion. 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.


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