Just think. What if you told people you have RA and they actually knew what that meant instead of dismissing it? What difference would it make if Rheumatoid Disease had comparable NIH research funding to understand what causes RA? What if there were treatments that worked for all RA patients? What if newly diagnosed RA patients had the kind of support and tools that are available for other serious diseases? What if there were mounting resources leading to a cure for RA?
I could go on and on. But you get it: There are certain obvious and specific things that absolutely must be done with regard to Rheumatoid Disease. The kinds of things that people ask me every day: “Why hasn’t anyone ______?”
As a matter of fact, I’ve heard desperate people ask dozens of times “Why doesn’t the RA foundation work on this?” Of course there was NO “RA foundation” to do any of those things.
Every issue we discuss here at RAW is a need a patient foundation should address!
After a couple years, the need for such an organization was obvious and the burden for it intense as I recognized what MUST be done. I had numerous meetings and discussions, as Katie Beth, Kevin, Barb, and others could tell you. And what my dear friends would tell you is how long I resisted doing it myself – because I have unrelenting RA and was already working more than 40 hours a week as a volunteer with RA Warrior. I just didn’t see how I could add another 20 hours a week to start a non-profit.
But we kept meeting and discussing. And patients kept asking, “Why do people think RA is just arthritis?”Or “Why isn’t there more progress toward a cure?” Until a group of us became convinced that WE MUST DO IT OURSELVES AND WE MUST DO IT NOW.
So a year and a half ago, we founded the Rheumatoid Patient Foundation (RPF), with the determination that the next generation will not face the same the same roadblocks we have with RA. We will not allow our children to suffer in the same ways we or our loved ones have.
If I write about certain topics, hundreds will comment! But the solution is the SAME for each one: RPF!
Last night, I went to the newest phase of the RPF website and became a Lifetime Charter Member. I was happy to see a few dozen of you are already there. I hope thousands more will follow.
If every person who’s wanted greater awareness after being told “Oh yeah, arthritis, I have that too,” will join their voice, then we will quickly see a consciousness-raising.
If everyone who has failed a treatment will add their voice, then we will quickly be a force for a cure.
If every person who suffered long painful months or years before a diagnosis will join this cause, then the government of the U.S. will no long be able to ignore this terrible disease.
I wish I could speak to every one of you personally and I probably will speak to many of you over the coming years. I have spoken to hundreds of you already – thousands more on the blog and social media. Our young organization is flooded with opportunities. The Board of Directors and I are working very hard along with volunteers to meet those opportunities courageously. I hope you will join us. Ask your good doctor or nurse to join us too. And share this cause with everyone you know who cares about RA patients.
Click here to join RPF today and you’ll get an awesome membership kit with our new Rheumatoid Disease Awareness Card and I’ll see you in the RPF forum!
This afternoon I have one more neck injection. I’ve lost track of the schedule – I think it’s a facet injection this time at C2. My neck is very crunchy and painful now so hopefully it will help.
NOTE: Together with three other patient advocates I admire, I have an opportunity for a Panel at SXSW. We are confident we can bring the patient perspective front and center in a way that will make a difference.
TODAY is the last chance to vote so if you have time today PLEASE VOTE for us by clicking Thumbs Up and click LIKE. It will only take a couple minutes. (Edit 6/1/13: outdated link removed.)
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