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RPF Presenting Research Findings at ACR 2013 Annual Meeting

October 18, 2013 in Events

American College of Rheumatology Poster Hall

Several Rheumatoid Patient Foundation (RPF) board members and volunteers will be heading to San Diego next week for the 2013 American College of Rheumatology (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Scientific Meeting. In addition to hosting an exhibit in the Exhibit Hall as we have the past two years, we’ll be participating in the scientific meeting.

This year RPF submitted two abstracts, which were accepted by ACR and will be presented during Poster Sessions on Tuesday, October 29. Each day of the meeting, research abstracts are displayed and presented on oversized posters in what is called the Poster Hall. The two abstracts to be presented by RPF contain research data taken from surveys we conducted through our community.

Thanks to all who participated in these surveys, we will be able to present findings on the actual experiences of rheumatoid patients. The data challenge conventional thinking on rheumatoid disease and will open the doors to improved understanding of the patient experience and improved care.

The findings will be presented by RPF Founder and President, Kelly Young, and abstract co-authors. Details for each session are posted below, and the full abstracts can be found on ACR’s website by clicking on the poster title below.

More of RPF at ACR

RPF members will also be speaking at an ARHP session this year on the topic of patient engagement in rheumatology care. For details please read Speaking on Patient Engagement at the ACR / ARHP Annual Meeting.

Poster Title: Patient Survey Challenges Conventional Notions Regarding Symptoms and Experiences Of People Living With Rheumatoid Arthritis
Abstract: #2273
Presenter: Young, Kelly O'Neill BA
Co-Authors: Crowson, Cynthia S. MS; Symons, Dana M. BBA
Date: Tuesday, October 29, 2013
Presenter Available: 9:00 am - 11:00 am
Poster Available: 8:30 am - 4:00 pm
Location: Exhibit Hall B2-C-D

Poster Title: Patient Survey Regarding Utility Of The Health Assessment Questionnaire Reveals An Unrecognized Aspect Of Disease Activity In Rheumatoid Arthritis: Consequences Of Physical Activity

Abstract: #2272
Presenter: Young, Kelly O'Neill BA
Co-Authors: Symons, Dana M. BBA; Lumpe, Andrew T. PhD; Crowson, Cynthia S. MS
Date: Tuesday, October 29, 2013
Presenter Available: 9:00 am - 11:00 am
Poster Available: 8:30 am - 4:00 pm
Location: Exhibit Hall B2-C-D

by KatieB

RD Awareness Video Contest

October 20, 2012 in Events

The PRIZES!

FIRST Prize: Pentax Optio RS1500 Digital Camera

2 SECOND prizes: one of 2 $25 iTunes Gift Cards

The CONTEST! What’s the contest about?

For years, people who live with Rheumatoid Disease (PRD) have suffered because of confusion that RA is just a type of arthritis.video_camera_lens

·       Extremely low research dollars for RA
·       Need for accommodations in employment situations
·       Lack of understanding of the scope of RA even from medical personnel
·       Needs for assistance or understanding in social situations
·       Preventive and comprehensive medical care for a systemic disease
·       Problems with medical coverage of needed treatments
·       Difficulty in personal relationships

Because of its dedication to improve the lives of people with this disease, the Rheumatoid Patient Foundation (RPF) is sponsoring this contest for people to express why it would be better for this disease to be called what it is, a disease. Calling a disease by one of its symptoms, “arthritis,” has caused problems for patients, researchers, and care providers long enough.

What is the most important REASON TO YOU for the name of the disease to be changed?

Click here to read a printable page of some reasons that many will benefit by changing the name of RA. HINT: maybe this will also give you ideas for your video!

How to enter

Click here to go to the Donate a Video page to upload your video.

But, first read through the short & easy TIPS list there to make your video BRILLIANT!! (And help you WIN!)

BE CREATIVE! Make your video any way you like! You might use photos, slides or home video, or just talk to the world through the camera and tell them your opinion. Maybe you can make an animated video or use a of the cartoon programs such as the Xtranormal storytelling application.

The fine print

The Board of Directors will determine winners based upon clarity of message, creativity, and clever use of technology. By uploading your video, you grant RPF permission to present all or part of your video as an example of patients’ opinions. Of course if RPF uses any part of your video, it will be for the cause of increasing awareness of Rheumatoid Disease to bring improved understanding leading to better research and a cure. Everyone is eligible: patients, caregivers, or health care professionals, except for Board Members or Employees of RPF. Entries should be 90 seconds or less. Enter more than once if you like. Upload your video at this link before November 30th.

GOOD LUCK!!

by KatieB

Donate a Video

October 20, 2012 in

Tips to make your video Awesome, Brilliant and Clear!!

Shoot the video in clear lighting perhaps outside in a quiet place without background noise.

Be yourself and don’t worry about saying it perfectly.

Set your camera on something or use a tripod for stability.

Uploading

Click here to upload your video. When the page opens, input your name and email address, then continue to upload your video. It may take a little while to upload so make sure you have a good internet connection.

When you upload your video, you acknowledge that you have the rights to the video you are uploading and that the Rheumatoid Patient Foundation 501c(3) may, but is not required to use all or part of the video in any of its publications, presentations or on its website.

If you have any questions or would rather just email the video, email katieb@rheum4us.org

More Tips

  • Before you begin your video and after you finish your video, take approximately 5 seconds of footage of you looking directly into the camera without speaking.
  • Please begin by restating the question you are answering. For example, if the question is “What is my favorite color?” respond, "My favorite color is…”.
  • Feel free to make a video out of slides or pictures and music if you have the rights to it.

What kind of video do I make?

For information about the current video contest click here!

 

by KatieB

A Birthday Story

October 14, 2012 in Exciting

By Eric Neevel

Birthday Cake

Birthday Cake

Birthdays! A time for cake, ice cream, celebration of life, and hopefully, gifts. But what if instead of receiving birthday gifts you used the opportunity to give a gift? Recently, we connected with Rheumatoid Autoimmune Disease (RAD) patient Tanya Martin to discuss what led her to do exactly that.

Tanya -- who has personally suffered with RAD since 2003 -- used her last birthday as an opportunity to raise money for the Rheumatoid Patient Foundation (RPF). She set up an online fundraiser and encouraged friends and family members to donate to her cause as a birthday gift for her. Starting her cause just a few weeks before her birthday, it only took a few days to exceed her personal hopes of raising $500. In about a two-week time period Tanya went far beyond her goal by raising a total of $1,161 for the RPF.

Using Causes.com helped Tanya make her idea a reality. “Causes.com makes it really easy. Three easy steps and they had the page ready to start accepting donations.” Then, using the power of social media, she began to promote her cause. “I did a few posts on my blog -- TanyaMartin.com -- about it and almost daily tweeted it on Twitter, shared it on Facebook, and other social websites. Most of the money came from friends and family, [though] some came from the social marketing.”It wasn’t long before the donations started and Tanya’s goal was met.

Tanya explained why she chose the RPF. “I have wanted to start a non-profit for RA since 2006,” she said, but the realities of life with RAD, raising a family, and running a business prevented her from achieving that goal. However, last year her dream of having a non-profit solely for RAD came to be when the RPF was formed. “I feel I got what I wanted for years. RPF definitely has any time, marketing, or any other help I can give them. I really appreciate that there is finally a place for patients with RA.” She explained that her passion for the RPF is more than her simply being affected. “My mother had severe Rheumatoid Arthritis starting in her early 30’s. I can remember opening jars, putting gas in the car, or just running into the store for her before I was even a teenager.” Tanya also has a sister who has RAD as well, making her fundraising cause a family cause.

One of the nice things about birthdays is that we always know when they are coming, and Tanya is already making plans for her next one. “I will definitely do this again for my next birthday and I might use it for a personal wish. Causes.com also does memorial, personal, holiday, wedding, run/walk, and ride wishes.” Using their services made this an easy and achievable goal for anyone. “I would ask for a higher amount and start a month before my birthday instead of a couple of weeks,” she said in closing. A gift worth sharing for any cause and worth considering for ours, and one that looks beyond receiving to giving again and again.

by KatieB

Comfort in Suffering

January 27, 2012 in Encouragement

By Jodi Whisenhunt

I’ve been blessed with Rheumatoid Arthritis (RA) since 1997. Because my symptoms were relatively mild and medication kept disease activity to a minimum, I lived in denial for many years. Sure, my joints hurt, but I was young and active and still in that youthful mindset that I was invincible.

I continued to exercise. I continued to raise a family, to work, to live. Most people didn’t know anything was wrong with me. I spoke of RA with only those who asked. When friends shook my hand, they mistook my wince for a wink of my eye. When I was slow to stand, they assumed I was in no hurry. Clothes concealed knee braces and wrist supports. Those who did know I was sick thought my illness was manageable, because I hid my bad days. I didn’t want my RA on display. Even though support bandages brought much relief, it felt fraudulent to wear them, because I didn’t have an injury. I, it seemed, had bought into the mentality that since RA was invisible, it wasn’t real.

The problem was I could feel it in a very real way.

For a time I went unmedicated. I explored alternative therapies: homeopathy, nutrition, cold lasers, detoxification. I discovered some things that increased flares but nothing that reduced them. As is the nature of any chronic illness, left untreated, my symptoms worsened. Before I opened my eyes each morning, I would assess which joints were functioning and which were not. Would I be able to stand? Would my shoes fit? Could I brush my hair? Prepare my own food? Hold my children’s hands?

Denial was no longer possible; RA demanded to be heard. I longed for comfort in my suffering, and I wondered why, after so many years, I was no longer able to conceal my weakness—my flaw.

The apostle Paul understood affliction. He said, “It was because of an illness that I first preached the gospel…” to the churches of Galatia (Galatians 4:13). He’d been headed elsewhere when physical infirmity diverted him. I, too, was headed somewhere else in life. I had no desire to visit the region of chronic illness. I expected to journey through life without detour. The trip was plotted on my map of intentions. I’d fly through youth with a layover in childbearing years. I’d hike the hills of middle age and trek on into the golden years without a hinge. But like Paul, illness reduced my plans to ashes and blew me into unexpected territory.

As a Christian, I read what Paul said in Acts 14:22, “We must go through many hardships to enter the kingdom of God,” but that didn’t make me feel any better. It just confused me more. Why would pain and struggle be a requirement of heaven.

Before Jesus left the earth, He warned the disciples in this world they would have trouble. It may sound the opposite, but He said that to encourage them. In that same statement, He also assured His followers He would leave them His peace (John 16:33). And that is where I found relief. Why had I been surprised at pain? Why had I been embarrassed by affliction?  Even Jesus “learned obedience from what he suffered” (Hebrews 5:8). Perhaps I had much to learn myself.

I stopped hiding. My RA became visible so others could see Christ through me. Today I view my Rheumatoid Arthritis not as a disease that chars my spirit, but as an instrument of God to draw me close to Him and to direct others to Him. RA sidetracked me, because I was walking the wrong path. It turned me around and pointed me in His direction. RA reminds me of my daily need for God’s compassion and grace, and it alerts me to His unending mercy. “My comfort in my suffering is this: Your promise preserves my life” (Psalm 119:50).

by KatieB

Rheumatoid Patient Foundation RA Survey

October 3, 2011 in Important

The RA Survey is an opportunity for patient voices to be heard.

Our first survey asks basic questions about living with RA that many patients have never been asked. Our goal is to learn more about RA patients so that we can better represent their needs.

The survey answers are anonymous. However, no one can replace your response. The more people who respond, the clearer the portrayal of RA will be.

RPF is using a secure survey service called Wufoo to manage the RA Survey. Watch for updates with some electronically generated reports produced with their program.

If you are living with Rheumatoid Disease, you can fill out your RPF RA Survey – just click here. It usually takes about 10 minutes, but you can take longer if you like.

by KatieB

1st RPF Survey

September 17, 2011 in