Good News for Rheumatoid Arthritis Warrior
I’ve been promising a good news list! Over the last couple of weeks, there has been good news for the Rheumatoid Arthritis Warrior community. I hope you’ll celebrate this good news with me. Any increase in the understanding of RA is good news for all of us. Likewise, any boost to the Rheumatoid Arthritis Warrior site is good news for all of us with RA.
Good news on writer of the Woman’s Day story on Rheumatoid Arthritis
Over the last couple of months, I’ve had some conversations with Judi Ketteler, writer of the infamous Woman’s Day piece on RA. Judi shared with me that she felt sick about how the article turned out. I believe that she regrets having relied upon a single source which was not a patient living with RA. She has a much different understanding of RA today. The conversations we had were private, but I wanted you to share the sense of delight that I have in knowing that one person has changed her mind and discovered the truth about RA, so I asked Judi for permission to share that with you.
Note: The editors at Woman’s Day continue to stand by the article as an appropriate portrayal of RA, based upon backing of the Arthritis Foundation. To my knowledge, they have not responded to any one of the hundreds of letters to the editor that they received about RA. You can watch my video response and get the address to write to them at this link – but read the rest of my good news first!
Good news: the Mayo Clinic Center for Social Media Advisory Board
Last week, I was invited to join the Advisory Board for the Mayo Clinic Center for Social Media. There will be some meetings to attend, both online and in person and some written contributions. It is a volunteer position that I’m glad to accept. Here is their news post if you want to read more about this board or the Center for Social Media itself. I’m thrilled about having an opportunity to work with people I admire so much – here is the list of the other members.
News on Rheumatoid Arthritis seminar featuring RA Warrior material
I got good news about a seminar about RA next week. The seminar itself is good news because of the focus of the research on patients’ lives and the presenter will be using a video from our RA Warrior YouTube channel, some quotes from this website, and portions of the post, 20 Things Not to Say to a Rheumatoid Arthritis Patient.
It’s good to know that Dr. Rebecca Bader understands the “real RA” as many patients call it. I look forward to hearing about her research focused on improving the lives of RA patients. The seminar will be broadcast via live webfeed. Go to this link at the Burton Blatt Institute to learn how to watch the feed. The following is an excerpt from the news release about the upcoming seminar on Rheumatoid Arthritis:
During a public seminar at noon, Feb. 1, …Rebecca Bader, assistant professor of biomedical and chemical engineering in the L.C. Smith College of Engineering and Computer Science, will provide her expert insight into how a combination of old information and new technology can be used to increase the quality of life of those with RA. Bader’s talk, “Old Concepts and News Insights in the Treatment of Rheumatoid Arthritis,” is sponsored by the Burton Blatt Institute (BBI) at Syracuse University. …Bader’s research was inspired by her aunt’s 41-year battle with RA, an autoimmune disease that causes chronic inflammation of the joints.
Good news: Tanya’s second Real RA Fit Kit video is here
Last month, we showed you how one of our readers created her own video showing realistic and safe ways to stretch with Rheumatoid Arthritis. Today you can watch her second video (below) about upper body strengthening. Whether or not you have RA or have the time or ability to exercise with Tanya today, her video is instructive. Of course you should ask your doctor before taking any exercise advice.
Rheumatoid Arthritis Warrior in AOL news
Some of you may have seen that AOL has re-posted a Health.com interview from last year that featured me. They did spin the story a bit, but it was undoubtedly good for a true Rheumatoid Arthritis story to be featured in the news. You’d laugh if you saw all of the “cures” that showed up in my email or the load of spam that landed on the blog. However, thousands of real patients and care givers also found RA Warrior through the AOL story!
Recommended reading:
- My RA Fit Kit – Rheumatoid Arthritis Exercise, Part 4
- General Practitioners Need Basic Rheumatoid Arthritis Information
- Woman’s Day Rheumatoid Arthritis Article: A Video Appeal
- Antibiotics as Rheumatoid Arthritis Therapy
This page was edited 1/30/2011 to add a link to the webinar mentioned.
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Congrats hon! I am so very proud of you! You are a wonderful voice for this illness.
Kelly you have been one very busy Warrior! Congratulations on the awesome accomplishments and continued work to get the word out about RA! I am very honored and proud to call you my friend.
kelly Thats all exciting news!..I knew you were destine to be Our voice of Rheumatiod! Bless you for doing this and being so forward thinking! I know you will speak for all of us! Im a cheerleader for you..go girl! Just remember to take care of yourself also..Much gratitude!
Kelly,
What wonderful good news youu have shared!! Congrats on your appointment to the advisory board at Mayo – such an honor – you must be so happy!!!
I am always talking about your blog and Facebook page to friends and family. I don’t know whether they check it out, I’d like to think they do. Thank you for all you have done!!!
So, so happy to hear all this GOOD NEWS! What a great honor for you and great news for us to have you on the Mayo Clinic Advisory Board! Thanks, also, for the update on the Women’s Day article–how nice to see how a little bit more knowledge can change attitudes, presentations and perceptions! The seminar about RA next week sounds great as well! On a snowy day in New England, we appreciate good news, and you made our day! Now I’m going back to read more details on the links you’ve provided….just wanted to send kudos to you first!
Here is some information about how to watch the webinar about RA on Feburary 1st. It sounds like you should start early or get your downloads ahead of time.
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To join the session on the day of the meeting, please click on the following link up to 60 minutes before the scheduled meeting time:
Enter your name at the Elluminate Session Log In box.
https://sas.elluminate.com/m.jnlp?password=M.7912549745024A9F03F9E46768DD49&sid=2009293
If you are using an assistive technology device such as Jaws please down load the JAVA Accessibility Bridge
http://www.elluminate.com/support/java_accessibility.jsp
PLEASE NOTE
If this is the first time you will be using Elluminate, you may be prompted to download some software which may take anywhere from 2 to 20 minutes depending upon your Internet connection speed. You can pre-configure your system with the required software by going to the support page located at: http://www.elluminate.com/support.
PHONE CONFERENCE BRIDGE
For individuals who use a relay service or are having difficulty in hearing the audio, a phone conference bridge is available.
Call: 1-866-689-2577
Note: This is a toll free number no pin required.
Dial into phone Conference Bridge, 5-15 minutes before start of the webinar:
Kelly- I’m THRILLED for you and your family! Patients everywhere have benefited from your service, and now will have so much more to gain by this “GOOD NEWS”! Justice has been served!!
Bob
Thank you for this website. I have only been battling the real RA for a year and a half. The disease hit me hard causing a 30+ lb weight loss, constant fevers, fatigue, never ending pain, joint damage as well as a significant decrease in my usual activities and my social life. The one thing I have learned is to appreciate the really small things and that there are many people who battle much worse health wise with a smile on their face every day. Even my own husband does not really get it and it is wonderful to visit a site that does “get it”. Keep up the good work and if there is anything I can do to help you, please, please let me know.
Congratulations, Bless you and Thanks for all of your hard work Kelly!
How does one thank another for their selfless actions that benefit so many? Thank you.
Congratulations Kelly~! Your wonderful voice for your dreadful disease (and ours) is now much louder and we are all thankful for it!
Wow, this is all such fantastic news Kelly! Way to go!
Did I tell you that the RAFit Kit is just a way to get people w/RA to go in and look at a biologic med? I wish I had asked my rheum back in Dec when I thought about it, I would have saved a lot of time answering a questionaire that didn’t give me a tailored workout. My Rheum said she flat out told the rep no, she wouldn’t put up an advertisement about it because it wasn’t right how they were trying to lure people into the information.
Several other patients have said this too. I did get this impression from their commercial. I think that’s what motivated Tanya to show a reasoned approach.