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by KatieB

Amazing Advocates: Inspiring Stories from Patient Advocates

July 12, 2013 in Advocacy, RPF News

Several people in our community have shared stories with RPF recently about their own advocacy efforts and contact they've had with government officials in light of the newly established Rheumatoid Awareness Day. We want to share their inspiring stories as encouragement to others who want to join in advancing the cause of rheumatoid patients through advocacy activities. Click here for some basic tips about patient advocacy and to see some example letters.

By Janette Sands

janette-sands2I wrote to my congressman this morning – in an effort to support our cause I think it is a good first step.  Click here to view a copy of the letter that I sent.

Congressmen need to hear our stories; maybe they can in the future, sponsor legislation for us. My dream and a sure great way to start off the campaign would be for one of them to sponsor Rheumatoid Awareness Day as a federally recognized day.

If each warrior is able to write a personal note to their Congressman and start the conversation/education/relationship it would open their eyes -- or at least when we start visiting them they will be on task with us.

All congressmen have a local office, anyone from their constituency can make appointments with their staff to talk or just drop off the press release. From my experience, writing a personal letter normally helps getting personal attention.

The two links below will allow each warrior to do it individually.

 NOTE: If you have written a letter or conducted other advocacy efforts, RPF members would like to hear about it. Please email Advocacy@rheum4us.org to share your story.

Amazing Advocates: Changing the World

July 5, 2013 in Advocacy, RPF News

Several people in our community have shared stories with RPF recently about their own advocacy efforts and contact they've had with government officials in light of the newly established Rheumatoid Awareness Day. We want to share their inspiring stories as encouragement to others who want to join in advancing the cause of rheumatoid patients through advocacy activities. Click here for some basic tips about patient advocacy or here to see example letters.

Rheumatoid Awareness Day Proclamation - Wausau, WIBy Shannon Young

My favorite quote is by Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Therefore, I live my life being involved in things in my community that I hope are making a difference – alcohol and drug abuse prevention, neighborhood work and kid-serving organizations.

Being diagnosed with rheumatoid disease (RD) was a complete surprise to me, as the onset came quickly after a surgery and was fast and furious. I found that some of the things I loved being involved in I had to give up, but the connections made through that involvement set the stage for me to be able to promote awareness of rheumatoid disease.

I was thrilled when I saw the press release about Rheumatoid Awareness Day! I knew this was an opportunity to start a conversation about this disease in Central Wisconsin. Because it is one designated day, I decided that a proclamation by the Mayor of Wausau was the best way to start. I looked online for other proclamations to see how they were worded. I then went to the RPF website and RAWarrior website to pull out the most important pieces of information on rheumatoid disease and put those golden nuggets in the proclamation format.

With the “work” already done, I contacted the Mayor’s secretary via email and asked her what is necessary for the Mayor to sign a proclamation. I already had an established relationship with both her and the Mayor from prior neighborhood work, but you can make this type of contact without a prior relationship, as well. She explained to me that proclamations are signed in by the Mayor at a city council meeting – even better than I had hoped! She put it on the next council agenda, February 12, 2013 and said I should plan on being there for him to read it and sign it! She was grateful for the fact that all she had to do was print the proclamation on the paper they use for them. Notice the date was after February 2nd? I didn’t let that discourage me – this is about awareness and though the timing wasn’t perfect, it was a huge step forward.

David Biundo and I were able to attend the meeting and were called forward when the Mayor read the proclamation. There were some pretty surprised faces in the crowd when they heard some of the information about RD. We received a beautiful copy of the proclamation and from 2013 on, in the City of Wausau, WI, February 2nd is declared as Rheumatoid Awareness Day!

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Here is the actual text of the proclamation:

Whereas Rheumatoid Disease (also known as rheumatoid Arthritis) affects 1% of the population; and

Whereas RD is a progressive, destructive disease frequently leading to disability; and

Whereas RD is a disease in which immune cells attack joints and organs, including heart and lungs; and

Whereas almost 2/3 of patients have a 20% response or less to treatments; and

Whereas no cure is known; and

Whereas the United States spends a fraction on RD research of what is spent on rarer diseases with similar mortality rates; and

Whereas early diagnosis is critical in preventing irreparable damage to joints and other tissue; and

Whereas the Rheumatoid Patient Foundation has formed to create awareness, generate support, provide advocacy and push for research to find a cure; and

Whereas the Rheumatoid Patient Foundation has declared February 2 as Rheumatoid Awareness Day – a day to bring Rheumatoid Disease out of the shadows;

Now, Therefore, I, James Tipple, Mayor of the City of Wausau, do hereby proclaim February 2, 2013 and every February 2 thereafter,

Rheumatoid Awareness Day

Throughout the city of Wausau, and I commend this observance to all of our citizens.

by KatieB

Rheumatoid Awareness Jewelry

July 2, 2013 in RPF News

By Katie Beth Young

Just before the first Rheumatoid Awareness Day, the Rheumatoid Patient Foundation (RPF) released the Rheumatoid Disease awareness ribbon. We had a great response. Many of you have used the ribbon in many ways including on social media via Twibbon or at local awareness events.

Rheumatoid Awareness Bracelet

Here's a lovely RD awareness ribbon that you can wear!

     

RPF member Paige Wright has created bracelets, earrings, and keychains out of the Rheumatoid awareness ribbon in her handmade jewelry store called Wright at Home Crafts. She has decided to donate 5% of the proceeds of all of her sales to the RPF. Thank you so much Paige!

You can get your Rheumatoid Disease awareness jewelry here and Paige's other handmade disease awareness items.

Be sure to check out the partners page for our corporate members and partners. If you or anyone you know is interested in being  a corporate member or business partner like Paige, send me an email at katieb@rheum4us.org

Partners

June 22, 2013 in

RPF thanks its corporate members and businesses partners for their support. Click here for information on corporate memberships, or contact us to discuss other partnership opportunities.

imaware™


The imaware™ mission is to expand health awareness through convenient home-based health testing. Empowering individuals with the tools to drive awareness to chronic illness and to provide access to their health information to take corrective action to live a better quality of life sooner. imaware™ designs and validates each test alongside their advisory board of world-renowned medical doctors from prestigious medical research facilities. For more information, visit us online at imaware.health

Myriad Autoimmune

Myriad Autoimmune is passionate about impacting patient lives for the better. We are committed to providing actionable information with our molecular blood test, Vectra, to guide medical management decisions in patients with rheumatoid arthritis and improve patient outcomes. Vectra is a validated objective measure that combines 12 biomarkers, age, gender and adiposity to provide a personalized score of inflammation in rheumatoid arthritis. For more information on Vectra, please visit: www.vectrada.com.

Susan Cabral

Screen shot 2013-02-02 at 10.38.14 AM

BEFORE THE FIRST SNOWFALL is a beautifully touching, original, mother’s tribute memorial song by BOSTON GIRL Country Music Singer-Songwriter SUSAN CABRAL, inspired by her mother, for yours. You can download the song for .99 cents on iTunes.

All proceeds of this song goes to support the RPF.

Death by Rheumatoid Arthritis

cj-dbra-lg1Author Carla Jones is a RPF advisory board member and member. Carla Jones is dedicated to bringing awareness to the undisputed fact that anyone can die from complications related to rheumatoid arthritis, and to promote early detection of cervical collar damage, for those with the disease. Her mother died as a result of Rheumatoid Disease and she has authored the book Death by Rheumatoid Arthritis. You can buy the kindle version for .99 cents of amazon.
Carla donates the proceeds from the book to RPF.

by KatieB

New Coordinator for Dedicated RPF Volunteers

April 25, 2013 in Events

Over its first couple of years, RPF has been blessed with talented and enthusiastic volunteers. All of the activities detailed in our recent annual report were accomplished on a volunteer basis. If you’ve read the new white paper, you’ve seen the work of several different volunteers who contributed at every stage of the process, from answering survey questions to compiling the data to donating photos to final review by some of our advisors.

Press releases and newsletter articles, poster and brochure design, fundraisers, the new Rheumatoid disease ribbon, and the RPF store… are just a few of the ways volunteers have contributed in recent months. As a national organization, RPF has rapidly reached a point at which it requires the efforts of a Volunteer Coordinator.

And now, I have the pleasure of introducing to you our new Volunteer Coordinator, Shannon Young.

ShannonShannon is passionate about helping people find the things they can do to make a positive impact. She shares RPF core values, and is committed to seeing our mission carried out. Shannon knows “it will take many hands to accomplish” our goals, and she looks forward to helping equip and support them. She told me recently: “I believe that for an organization to thrive and reach its goals, it must be a learning organization where staff and volunteers at all levels, individually and collectively, are continually increasing their ability to produce results they really care about.”

Please join me in welcoming Shannon.

Click here to complete a volunteer interest form. Shannon will be contacting all volunteers soon. Please be patient – she’s a volunteer too.

Note: RPF has other volunteers and staff who share the names “Shannon” or “Young;” however Shannon Young is not related to any of them.