Archive for the ‘Special Occasion’ Category
-
Happy Birthday RAW! The Day I Could No Longer Stay Silent
This week the British Medical Journal published my article which they titled: Doctors’ understanding of rheumatoid disease does not align with patients’ experiences. But first, today is a very special day. Today begins year five of RAW Four years ago today, RA Warrior was born. I’d been studying, writing, and talking to patients for a [...]
-
RPF White Paper Indicates Patient Experiences Differ from Typical Perceptions of Rheumatoid Arthritis
Patient Experience and Rheumatoid Disease This site has always been dedicated to “presenting the patient story in a way that may increase understanding of the disease by doctors and researchers” as one of its three goals. The Onset Story project has been an important part of that, both for patients and for healthcare professionals searching [...]
-
An Event Especially for Gathering Encouragement
You’re not alone If I’ve said it once, I’ve said it a thousand times, “You’re not alone” with this disease. So many of us share experiences. And yet, we hear frequently about the loneliness that Rheumatoid disease creates. Community is a tremendous remedy and it’s what brings many warriors here time after time. Hearing “you’re [...]
-
What Drives Patients to Get Engaged in Healthcare?
Did you ever forget what you were about to say? Last year when I testified at an FDA advisory hearing, I couldn’t even remember my name. I swear I could feel my heart leaping six inches in front of me. It was unexpected because I’d recited my five-minute speech dozens of times from memory. How [...]
-
Thoughts about Schedules & How Evil Tongs & Barstools Are
Sometimes there’s a weird reason it seems impossible to write – I have too much to write about and I don’t know where to start. There are lists of topics I want to write about and dozens of articles begun that I haven’t finished. Today I want to write about how evil tongs and barstools [...]
-
The Best Rheumatoid Arthritis News Story I’ve Ever Seen
Click now to hear the news story as it aired February 4, 2013 on KPCC, the local NPR affiliate in South Central Los Angeles. Honest rheumatoid arthritis news story on NPR station Jose Martinez KPCC interview Jose Martinez, writer for OnCentral: Reporting on health and quality of life in South LA, first contacted me a [...]
-
Seeing Light and Shadows in Groundhog Day and RA
TODAY, February 2nd,is the first Rheumatoid Awareness Day. Read more below about how you can be involved. Amateur actress shares Groundhog Day’s special place in her heart My sweet friend Steph, one of the bright treasures that I have gained from living with this disease, sent me a story in an email yesterday. I’ll hope you’ll [...]
-
This is our 10K
Have you read the posts on the Facebook event for Rheumatoid Awareness Day February 2nd? The stories, like thousands of comments on this site, describe the range of experiences and emotions people face with this disease. I’ve said your comments are like another whole blog– and that’s true. Together, we tell the full story of [...]
-
$10,000 Matching Opportunity for Rheumatoid Awareness Day
Crescendo Bioscience is sponsoring a matching grant challenge with the Rheumatoid Patient Foundation (RPF). In honor of Rheumatoid Awareness Day, every donation made to RPF between now and February 5 will be matched dollar for dollar. In effect, your gifts will be DOUBLED up to $10,000. To make a gift now – click here http://bit.ly/give2RPF. [...]
-
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 [...]
-
1st Rheumatoid Disease Awareness Day – Groundhog Day 2013
A DAY FOR RHEUMATOID ARTHRITIS AWARENESS: FEBRUARY 2 February 2nd will be the first annual Rheumatoid Awareness Day – CLICK TO READ PRESS RELEASE. Details about how you can get involved in the first day of recognition for people living with Rheumatoid Disease, previously “Rheumatoid Arthritis,” can be found here. Muse with me for a [...]
-
Martin Luther King Day: Remembering That One World Is Enough to Share
New generation delivering message on importance of civil rights I’ve passed on to my children my passion for American ideals such as justice. This picture was taken on a recent trip to Washington, D.C. at the Martin Luther King memorial. It’s been my Facebook cover picture for the past few months, inspiring me to remain [...]
Subscribe to feed
