FIRST AWARENESS DAY FOR RHEUMATOID ARTHRITIS ESTABLISHED BY RHEUMATOID PATIENT FOUNDATION

Here's a copy of the press release that went out over the wires yesterday. We're being contacted from media across the country. Please feel free to forward it to any journalists you have contact with. Patients Increase Public Awareness of Underestimated Disease January 22, 2013 – Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day...Continue reading      14 Comments » Read more

1st Rheumatoid Disease Awareness Day – Groundhog Day 2013

Rheumatoid Disease Awareness Day - FEBRUARY 2 A DAY FOR RHEUMATOID ARTHRITIS AWARENESS: February 2nd is the annual Rheumatoid Disease Awareness Day – CLICK TO READ PRESS RELEASE. Details about how you can get involved in the day of recognition for people living with Rheumatoid Disease, previously “Rheumatoid Arthritis,” can be found here. February is heart disease month, which is...Continue reading      20 Comments » Read more

A World Where No One Suffers from Rheumatoid Disease

When you’re making any charitable donations, please remember the Rheumatoid Patient Foundation (RPF) is each of us helping all of us. The RPF Vision: A world where no one suffers from Rheumatoid disease. Finally we have an organization with the specific purpose of improving the lives of people with Rheumatoid disease. Much has been accomplished quickly over...Continue reading      7 Comments » Read more

Helping the Healthcare World Understand Rheumatoid Disease

The “don’t-miss-the-plane” rush is on. My suitcase is half packed. I have a fever and I’m not washing my hair today because my wrist can’t muster it. Yet, I’m going to get on that plane to D.C.! Why all this bother? I’ve received messages from thousands of precious people telling their stories and how this website...Continue reading      23 Comments » Read more

What If Rheumatoid Disease Were Recognized, Properly Funded & Medically Understood?

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...Continue reading      17 Comments » Read more

Beginning Our 4th Year! 5 Stunning Things I Learned & My Forecast for the Future

Three years ago today, I typed my first blog post in my back yard on a whim. My daughter had started to blog – what’s to worry about – just do it! Before that, I’d been working on ideas for months. I did have a goal: to build a website where RA patients could find...Continue reading      44 Comments » Read more

FDA Arthritis Advisory Committee Hearing for Pfizer’s RA JAK: Tofacitinb

Advisory Committee hearing feed link My daughter Katie Beth and I are in Washington, DC for the final FDA Arthritis Advisory Committee (AAC) hearing about Pfizer’s JAK, tofacitinib. Early in the morning, Katie Beth and I will be en route to the meeting. The AAC meeting will be broadcast online with a live feed. We’ve been told...Continue reading      27 Comments » Read more

Attending an FDA Hearing for Pfizer’s JAK: Tofacitinib CP-690550

Three years ago, one of the first friends I made through my blog was Angie. She got into a Pfizer clinical trial for tofacitinib (then called tasocitinib). She sent me some info about the trial, but my rheum doc wasn’t interested and I didn’t pursue it. The current excitement about Pfizer’s tofacitinib Tofacitinib is an oral medication...Continue reading      28 Comments » Read more

We Refuse to Be Mislabeled: Updating Rheumatoid Arthritis (RA) to Rheumatoid Disease (RD)

Three years ago, I saw Rheumatoid Arthritis (RA) patients insisting that the name of the disease needed to be changed. They argued that until the “a” word is removed from the name, confusion about the disease will continue. When asked, I said that we could not wait around for that to happen; let’s work for...Continue reading      100 Comments » Read more

Kelly Young Wins WebMD Health Hero Award

WebMD magazine chooses Kelly as 1 of 4 “Champions of Care”! Look what I found on my dresser when we got home from Chicago last night! The new WebMD magazine with yours truly in it! You can click on the images to enlarge and read the text or read the story on the WebMD Health Hero honorees...Continue reading      49 Comments » Read more

Mayo Clinic Video Interview: Patients at ACR Scientific Meeting

Some of you may be puzzled about what I’m doing in Chicago. So here’s a brief summary and a video interview with Mayo Clinic News Blog telling why patients are interested in a scientific meeting like the ACR Scientific Meeting. What happens at the American College of Rheumatology Scientific Meeting? “The ACR/ARHP Annual Scientific Meeting will be...Continue reading      11 Comments » Read more

Behind the Scenes Video: Patient at a Social Media Conference

Telling it like it is. On camera. It’s uncomfortable. It's very hard to talk about harsh pain. Why does pain seem so embarrassing? I even gave birth in quiet agony a few times because of that. 3 aspects of RA that are difficult to discuss It’s hard to talk about pain, so most of us are pretty private...Continue reading      4 Comments » Read more

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