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Letter Writing Campaign to Vice President Pence

February 1, 2017 in Advocacy, Important

Mike Pence rheumatoid patient foundation fundraiser

Mrs. Karen Pence, then Governor Mike Pence and Mayor Kristen Brown (of Columbus, IN) at RPF Fundraiser in 2013.

The Rheumatoid Patient Foundation has started a petition to get a national proclamation for Rheumatoid Awareness Day. Click here to read and sign the petition. A national proclamation has to be made by the President of the United States. However, we are asking people to join in a letter campaign to Vice President, Mike Pence, to help get the President's attention. VP Pence has a personal connection to rheumatoid disease, as one of his relatives lives with RD. Mike Pence (then Governor of Indiana), along with his wife, attended an RPF fundraising event in 2013 put on by Kim Pence on be half of her daughter, Kelsey Pence Russo.

Since we already know that Vice President Pence is familiar with rheumatoid disease and has already shown dedicating to promoting awareness, we are aiming to have him become a champion for our Rheumatoid Awareness Day petition. As someone with access to and influential with the President, he's an ideal person to have take up our cause.

Please consider e-mailing Mike Pence through the whitehouse.gov website. Select "Reflections for the Vice President" under "Message Type" and tell Vice President Pence why you think it's so important that we get a national proclamation for February 2nd as Rheumatoid Awareness Day. To help get you started, we've included a sample letter below that you are welcome to use. We also encourage you to make it personal and share why this is so important to YOU.

Together, we can help bring rheumatoid disease out of the shadows!

E-mail Vice President Pence

SAMPLE LETTER TO VICE PRESIDENT PENCE

Dear Vice President Pence,

In 2011, the Rheumatoid Patient Foundation was established as the first non-profit organization in the United States solely focused on improving the lives of people with Rheumatoid Disease. Two years later, Rheumatoid Awareness Day was established as February 2nd by that same foundation. While several cities and localities have issued official proclamations, we are still lacking a national proclamation for Rheumatoid Awareness Day in the United States.

Rheumatoid Disease (also known as Rheumatoid Arthritis) is a progressive inflammatory disease causing damage to joint and organ tissues, resulting in severe pain, frequent disability and increased mortality. Because the disease is commonly presumed to be a type of arthritis, proper support is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding.

This year, the Rheumatoid Patient Foundation is petitioning the President of the United States to issue a National Proclamation declaring February 2nd as Rheumatoid Awareness Day. A nationally recognized Awareness Day would serve as an annual platform to educate people about the disease -- including patients, caregivers, healthcare professionals and the general public. Education and awareness are crucial to bringing about better clinical care, increased research funding and improved disease outcomes.

You have shown support for the Rheumatoid Patient Foundation and rheumatoid disease awareness in the past by participating in the fundraising race event with Kelsey Pence Russo in 2013. I hope that we can count on your continued support and ask that you would personally speak to the President and encourage him to issue a National Proclamation establishing February 2nd as Rheumatoid Awareness Day.

You can view the petition we have started at the following web address: https://www.change.org/p/president-of-the-united-states-national-proclamation-for-rheumatoid-awareness-day/

More information can be found at the Rheumatoid Patient Foundation website: http://rheum4us.org

On behalf of myself and the millions of others who have fought the crippling pain and damage of rheumatoid disease, I thank you in advance for anything you can do to help us increase awareness and bring rheumatoid disease out of the shadows.

Sincerely,
[Your Name Here]

Rheumatoid Awareness Day 2017: Proclaiming Awareness

February 1, 2017 in Advocacy, Events, Exciting, Important

Rheumatoid Arthritis Awareness Day February 2nd

Today marks the 5th annual Rheumatoid Awareness Day as established by the Rheumatoid Patient Foundation in 2013, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding.

RPF has put together a list of ways that you can get involved, in addition to a myriad of awareness images you can find on our website or on Facebook, that are perfect for sharing and educating others through social media. This year, however, we have a big way that we can all work together to make a difference and help bring rheumatoid disease out of the shadows.

Proclaiming Awareness: Petition for a National Proclamation for Rheumatoid Awareness Day

The Rheumatoid Patient Foundation has started a petition to get a national proclamation for Rheumatoid Awareness Day. Several of our volunteers have already gotten proclamations made from their cities and localities. This year, we are petitioning to have February 2nd proclaimed as Rheumatoid Awareness Day at the federal level. Add your voice! Click below to read and sign the petition.

Add Your Voice - Sign the Petition

In addition to signing the petition, we are also asking people to write a letter to Vice President Mike Pence, encouraging him to get the President's attention on this matter. Vice President Pence has a relative with rheumatoid disease, and has himself participated in a fundraising event for the Rheumatoid Patient Foundation back in 2013. Due to this personal connection, we will be asking Vice President Pence to help push through our petition for a national proclamation. If you'd like to send him a letter yourself, we've created a sample letter that you can work from. Click here to view the sample and click below to send Vice President Pence a letter asking him to support the national proclamation for Rheumatoid Awareness Day.

E-mail Vice President Pence

Bring Rheumatoid Disease Out of the Shadows

Help us bring rheumatoid disease out of the shadows. Here are some other ways that you can help get the attention of the White House and encourage others to get involved:

    • Write a physical letter to the President and/or Vice President
    • Call the President: You can leave comments at 202-456-1111 or reach the White House switchboard at 202-456-1414.
    • Tweet a note to Mike Pence (@VP) or Donald Trump (@realDonaldTrump or @POTUS) - encouraging them to support the petition and proclamation for Rheumatoid Awareness Day
    • Share the petition with those you know via email or social media

add-your-voice

Together, we can work to bring rheumatoid disease out of the shadows and into the spotlight for greater awareness and understanding. Together, we can do more.

Changing the Landscape of Rheumatoid Disease

November 28, 2016 in Advocacy, Encouragement, Events

 

changing the landscape of rheumatoid disease

The times they are a-changing. Perhaps not as quickly as we'd like, but there are a lot of signs that things are shifting in a positive direction in the field of rheumatology, with a focus on creating better outcomes for people with rheumatoid disease (PRD). Several years ago, the American College of Rheumatology made a big push for what they call "Treat to Target" (T2T). T2T involves setting a treatment goal and modifying the therapy if the goal is not reached -- with the underlying premise that "if you measure it, it will improve." T2T has potential to foster greater collaborations between patients and doctors and to promote the best possible outcomes. Unfortunately, despite ACR guidelines, in many instances PRD are not measured in any manner whatsoever. What would it look like if doctors and patients truly worked together toward common goals? We got a little glimpse...

My favorite session that I attended at this year's ACR Annual Meeting was a session by Dr. Iain McInnes of Glasgow titled "Treatment of Rheumatoid Arthritis When the Patient is Not Well." Arriving a few minutes late, I walked in to hear the words of a passionate (and humorous!) Scottish rheumatologist whose every word resounded with the truth RPF has been proclaiming: this is a systemic disease and each of the "multi-morbidities" (as he called them) must be recognized and treated as a part of the disease itself. Touching on cardiovascular risks, rheumatoid lung disease and even depression -- Dr. McInnes emphasized that each component must be measured, must be addressed-- "or the patient will die". It may sound dramatic, but the truth is that despite advances in treatment, the mortality rate of RD has not changed in recent years. Until we begin screening for and addressing other manifestations of rheumatoid disease, that statistic is not likely to improve.

We had the opportunity to talk with Dr. McInnes after his session and to thank him for speaking on this topic and sharing these simple yet important truths with other rheumatologists.  If every rheumatologist practiced the way Dr. McInnes preached, the landscape would be completely different.

There are a lot of great doctors in the U.S. and around the world who do take these things to heart, and we had the opportunity to meet many of them at ACR. While some doctors are still stuck in their own ways or have a hard time implementing proper guidelines due to time constraints and other pressures, we are hearing a powerful message that emphasizes measuring and treating the whole disease and working with the PRD to provide the best possible care and outcomes. It is this message that we want to continue to spread, and we hope to open the conversation so that we can overcome challenges to proper patient care.

Since its inception, RPF has been focused on changing the landscape of Rheumatoid Disease. We want things to look different -- better care, more effective treatments, better awareness, education & understanding -- and one day, a cure. Sometimes it may seem overwhelming, as there is so much work yet to do. But, as with any large-scale project, all we need to do is move one stone at a time. Working together, we can provide a better outlook for PRD, and one stone at a time we will work toward building our vision of a world without Rheumatoid Disease.

one stone at a time we will work toward building our vision of a world without rheumatoid disease

 

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by KatieB

15 Ways to Spread Rheumatoid Awareness in 2015

January 22, 2015 in Advocacy, Events, Important

by Dana Symons

rheumatoid arthritis disease awareness - indigo and gold colorsIn honor of the New Year and the upcoming annual Rheumatoid Awareness Day, I'd like to challenge everyone with 15 ways YOU can help spread awareness of Rheumatoid Disease in 2015. Get involved in time for Rheumatoid Awareness Day on February 2nd, and see how many of these you can complete by the end of the year!

1. Share Awareness Images on Social Media
We've created a whole gallery of images that you can share to spread awareness just through your social media profiles. Share an image on Facebook, Twitter or Instagram. Click here to choose from any of ours, or create your own!

2. Sport Awareness Gear or Colors
Visit our store to pick up awareness merchandise for Rheumatoid Awareness Day or all year round! Or, simply put in Indigo and Gold in support of Rheumatoid Disease. RPF Members -- don't forget to wear your pins!

3. Add a Twibbon to your Social Media Avatars
Click here to add a virtual Rheumatoid Disease awareness ribbon to your social media avatars through the Twibbon website.

4. Change your Facebook Cover Photo
Use one of our Facebook Cover images to help spread awareness, or create your own image!

5. Join #Rheum Chat - Special Chat to be Hosted February 1st at 3pm!
Follow the hashtag #rheum on Twitter to join in conversation about rheumatoid disease with other patients, caregivers, healthcare providers and industry professionals. It's a great spot to connect with others for encouragement and asking questions! Join us for a special #rheum chat prior to Rheumatoid Awareness day -- on Sunday, February 1st at 3pm. Click here for details.

6. Hand Out Awareness Cards
RPF Members may have received some Awareness Cards in their membership kits, but we also have a digital version that you can print out or share online. These few simple facts about Rheumatoid Disease can help set the record straight! Keep one in your purse or wallet as an easy reference when somebody asks you about RD. Click here to download a PDF.

7. Get an Official Proclamation for Rheumatoid Awareness Day in your Locality
Several RPF Members have already worked with their local governments to get an official proclamation for Rheumatoid Awareness Day on February 2nd. This can make a big impact on a community and may even attract the attention of local press. Read stories from other patient advocates here and here, or click here to get tips on how to be an advocate.

8. Tell Your Story
Your own story is so important. Sharing your experience with Rheumatoid Disease and how it has affected your life can go a long ways to create awareness and understanding of this illness. If you want to take it a step further, share your story online -- contact us and we'll post your story on our blog!

9. Become a Member
Become a Member of RPF and help support our mission of improving the lives of people with Rheumatoid Disease. Your support helps us extend our reach!

10. Support our Partners
Several individuals and corporations have teamed up with RPF to offer additional support through corporate donations or by donating a portion of merchandise sales. Visit our Partners page to learn more.

11. Create a 15 Second Awareness Video
This year, for Rheumatoid Awareness Day, we are encouraging individuals to shoot a simple 15 second video telling the world why we need a cure for Rheumatoid Disease. Post the video online and ask your friends and family to share it -- or create their own! Read more about the Rheumatoid Awareness Video Challenge here.

12. Educate Yourself to Better Educate Others
Keeping sharp on your own knowledge of Rheumatoid Disease is one of the best ways that you can spread awareness and accurate information to others. Click here for a list of key resources to learn more.

13. Host a Fundraiser
Use your creativity to plan and host a unique fundraising event! RPF members have done fundraising through selling merchandise, doing a race and even a paddle boarding event! The sky is the limit -- create an event that suits you and your friends and family. Contact us with your idea, and RPF will help you promote and support the event.

14. Donate a Photo
As RPF creates new images and publications, we are always looking for patient photos to use instead of stock images. We want to show the true faces of Rheumatoid Disease. Consider donating a photo for use by RPF. Click here to donate.

15. Plan Your Own Rheumatoid Awareness Day Celebration
There's not much to celebrate as relates to Rheumatoid Disease, but awareness and public education is something to get excited about! Host your own Awareness Day event and do something fun. Click here to send us photos and a description of your celebration and we'll post it on our blog!

There you have it. 15 ways to get involved and spread awareness for Rheumatoid Disease in 2015! Each of us has a sphere of influence. Combined, we have the ability to reach so many people with the truth of Rheumatoid Disease in order to create a better understanding of what people with Rheumatoid Disease live with, to boost research funding, to encourage better care and accommodation, and to bring hope to others by letting them know they are not alone. Pick one of the above, pick 5, or pick them all -- every little bit helps! Together, we can do more!

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by KatieB

15 Seconds of Fame: Rheumatoid Awareness Video Challenge

January 20, 2015 in Advocacy, Events

by Dana Symons

As we get ready for the 3rd Annual Rheumatoid Awareness Day on February 2nd, I want to challenge EVERYONE to create a simple video -- even as short as 15 seconds -- telling the world why we need to find a cure for Rheumatoid Disease. Rheumatoid Disease is estimated to affect about 1 out of every 100 people, so chances are most people know someone who has it. If you have RD, if you have a relative or friend with RD, if you are a caregiver -- add your voice now, tell the world why you want to see a cure, and help give Rheumatoid Disease 15 seconds of fame in 2015!

Share your video online and ask your friends and family to share your video and/or create their own! Use the hashtag #Rheum4ACure so we can find and follow what others are posting.

Here's a peek at my sample video (a little longer than 15 seconds, but yours doesn't have to be!).

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by KatieB

I Support RPF Because Patients Are the Best Advocates for Patients

January 28, 2014 in Advocacy

Rheumatoid Awareness Day is only a few days away, February 2. RPF member Elizabeth Riggs shares why she and her family support RPF. Dr. Riggs has served as a healthcare professional, educator, caregiver, and now as a patient gives her invaluable perspective on patient advocacy.

By Elizabeth Riggs, PhD

I support RPF because: There is no other charity just for Rheumatoid Disease.

Ted-Eliz-Shan-ACR13On a personal basis, as I have RD, and follow the rawarrior.com community, I am very much aware of the gaps in the support available for people living with rheumatoid disease (PRD). My husband, who has cardiac and lung disease, works hard to help me with my activities of daily living (ADLs). We cannot afford homemaking or personal services and don't qualify for any government-supplied services. Only through increased public awareness would those gaps in care be closed, so these kinds of services ever become more available. We don't qualify for drug assistance, so I cannot get on any of the biologicals. So far, I haven't qualified for any clinical trials, so I am "stuck" with "older" medications which are inadequate to my disease state.

Although we are personally blessed to have nearly all of our family members and many of our friends who are both understanding and supportive, there are many people who do not have these blessings. Only through improved public awareness will these gaps in support begin to be closed.

Many rheumatologists, especially in the USA, don't seem to have a clue (!) as to the pain and disability we PRD experience. So, they can’t do all our advocating for us. And we must help them understand. Only through professional education will we bring medical professionals to the level of understanding that will make a difference to PRD.

Drug companies don't seem to realize the suffering experienced by over two-thirds of PRD who don’t respond adequately to current treatments. Helping them see the need for more research, additional patient support, and reduced cost of drugs for RD is absolutely necessary!

The RPF addresses these needs and more through public awareness, professional teaching and education, patient-driven research, and PRD support.

The RPF can ONLY address these needs if we provide the money and volunteers to support RPF!

So, my husband and I support the RPF in every way we can!

Cheerio!
Elizabeth Riggs

You can read more from Elizabeth on her blog – click here.

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by KatieB

What Is Rheumatoid Awareness Day?

January 14, 2014 in Advocacy

The first Rheumatoid Awareness Day was Feb 2, 2013. It is impossible to measure its full impact, but tens of thousands of people participated in live online events or commemorated the day with local educational or fundraising events. If Rheumatoid Awareness Day is new to you or your organization, here’s a summary of the purpose of the occasion. Click HERE to see how you can participate in Rheumatoid Awareness Day.

Rheumatoid Awareness Day Graphic with Groundhog

Rheumatoid Awareness Day is February 2nd!

Rheumatoid Awareness Day is observed on February 2, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare costs and research funding.

One goal of this initiative is to overcome the misconception that rheumatoid disease is a form of arthritis. While the disease usually affects joints, the disease process is not related to osteoarthritis. RPF founder Kelly Young points out, “Joint inflammation is a prominent symptom of this disease for most patients, but it’s a disservice to refer to it as merely a type of arthritis.” She explains, “Patients describe the effects of rheumatoid lung disease even when their joints feel better than they have in years.”

Rheumatoid arthritis is a progressive inflammatory disease causing damage to joint and organ tissues, resulting in severe pain, frequent disability, and increased mortality. For most patients, current treatments neither relieve all symptoms nor assure a healthy future. Remission is rare[1]. Rheumatoid disease affects about one percent of the world’s population, and Mayo Clinic says lifetime risk of the disease is 3.6 percent for women and 1.7 percent for men[2].

Rheumatoid Awareness Day comes at the start of Heart Disease Awareness month, underscoring a serious aspect of rheumatoid disease: heart involvement. Studies show that rheumatoid disease may affect the heart prior to diagnosis[3]. Rheumatoid patients have higher incidence of stroke and atrial fibrillation[4] in addition to the specific effects of the disease upon the heart itself[5]. A study conducted by Mayo Clinic[6] reported that rheumatoid patients were twice as likely to experience silent heart attacks and sudden cardiac deaths.

Rheumatoid Awareness Day is observed with campaigns for raising awareness and educating about rheumatoid disease. The patient community and the public are encouraged to get involved by sharing educational resources, promoting awareness messages via social media, joining live online chats, and participating in fundraising.

[1] Prince, F et al. Arthritis Research and Therapy. Sustained rheumatoid arthritis remission is uncommon in clinical practice. http://arthritis-research.com/content/pdf/ar3785.pdf
[2] Mayo Clinic. 2011. Mayo Clinic Determines Lifetime Risk of Adult Rheumatoid Arthritis. http://www.mayoclinic.org/news2011-rst/6137.html?rss-feedid=1
[3] Kerola, A et al. Annals of Rheumatic Diseases. 2012. Cardiovascular comorbidities antedating the diagnosis of rheumatoid arthritis. http://ard.bmj.com/content/early/2012/11/22/annrheumdis-2012-202398.abstract
[4] Jesper, L et al. British Medical Journal. Risk of atrial fibrillation and stroke in rheumatoid arthritis: Danish nationwide cohort study. http://www.bmj.com/content/344/bmj.e1257
[5] Young, K. 2011. Rheumatoid Arthritis Warrior. 20 Facts About Rheumatoid Heart Disease. http://rawarrior.com/20-facts-about-rheumatoid-heart-disease/
[6] Science Daily. 2005. Mayo Clinic Finds Rheumatoid Arthritis Patients At Higher Risk For Unrecognized Heart Disease And Cardiac Sudden Death. http://www.sciencedaily.com/releases/2005/02/050204121639.htm

PRESS RELEASES FROM RHEUMATOID AWARENESS DAY 2013

FIRST AWARENESS DAY FOR RHEUMATOID ARTHRITIS ESTABLISHED BY RHEUMATOID PATIENT FOUNDATION

FIRST-EVER RHEUMATOID ARTHRITIS DAY, FEB. 2, BRINGING THOUSANDS TOGETHER

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by KatieB

In Their Own Words, Impressions of ACR Meeting from RPF Volunteers

December 4, 2013 in Advocacy

RPF asked volunteers to share their experiences of volunteering at the 2013 scientific meeting of the American College of Rheumatology. Today we present three perspectives, with more to come soon. Common themes: excitement about RPF's progress, excitement of meeting fellow members, and hope for the future.

Fellow warriors educating about RA

By Melinda Hansen

Rox_Jay_and_Melinda-ACR13I volunteered to help staff the RPF exhibit at ACR, the national rheumatology conference. It was an awesome experience. I had a chance to meet and talk with doctors, nurses, patients, researchers, and pharmacists. One of the highlights was meeting fellow RA warriors and people from other patient advocacy associations.

Many visitors to the exhibit said that they had been looking for a place to refer patients for information and support, and were happy to learn of the websites for RPF and RA Warrior. There was great interest in the patient education materials created by RPF, and many requested copies.

Kelly and Elizabeth Riggs, along with Dr. Jeffrey Curtis and Theresa Brady, gave a wonderful presentation at a session about incorporating the patient point of view into clinical practice: working with patients as partners, evaluating how each individual patient sees their disease, sharing decision making, educating patients on coping with the often-complicated range of symptoms and treatments.

This session was at the very end of the day on the last full day of the conference. Not only was it very well attended, but also when the session ran over, almost everyone stayed late till the discussion was complete. Usually people start leaving before the end, but not this time, a major compliment to all the speakers. Kelly, but the way, is a rock star!  She has moved and inspired and educated so many. While sitting at the RPF exhibit, everyone wanted to say hello and meet the person who has written so honestly and so insightfully about RA.

RPF had two poster presentations. They both describe surveys of RA patients and discuss aspects of the disease that are often misunderstood, or not well-evaluated with current tools.  One of the posters discusses how, although most RA patients are encouraged to increase activity and exercise, that this can, for some, cause worsening of symptoms and decreased ability to function. The other poster discusses many misconceptions about RA, including the concept of morning stiffness, which for many is not the pattern that symptoms follow; whether you can have joint inflammation without swelling (you can!); and in which joints RA can manifest itself (all!).

If you’re not in the medical profession, you may not know what a huge honor it is to have a research poster accepted for inclusion in this conference and to be invited to speak at one of the sessions. We heard from the audience that patients have had a much larger presence at the European version of ACR (EULAR), but that ACR has traditionally not made a huge place for patient involvement. So yay, Kelly and RPF, out there on the frontlines helping patients to be heard!

Presenting the Patient Voice at ACR 2013

By Elizabeth Riggs

Elizabeth Riggs podium ACR13-smThe best thing about ACR13 was getting to meet and befriend – in person – people I had only met online! All of them were just a great as I had imagined. We shared stories of onsets; medical diagnosis and treatment processes; medications and side effects; of docs who "get it," and those who don't. We stopped doctors passing by and told them about RPF. Nearly all took one of our brochures. Unfortunately, not all could (or would) stay and talk with us. The ones who did, however, were intrigued. Many were very nice and paid careful attention to the message of the volunteers and the literature.

On Tuesday, Kelly presented her two (2!) abstracts at the poster session. Then there was the educational session:

  • Teresa J. Brady, PhD, from the CDC presented "Supporting Self-management: Easier and Harder Than You Think"
  • Jeffrey R. Curtis, MD, MPH, MS presented "Effectively Incorporating Patient Reported Outcomes Into Patient Consultations"
  • Elizabeth Riggs, PhD, RN [that's me!] presented "Overcoming Obstacles to Shared Decision Making"
  • Kelly Young, [the RAWarrior, herself!] presented "Engaging Patients as Partners" (Of the 4 presentations, I thought Kelly's was the best of a really great lot!)

Having to leave was so hard. But, I have new friends to correspond with, a new friend here in my own town to hang with some, and many, many new ideas about the diagnosis and treatment of rheumatoid disease! God willing, I'll be along again next year in Boston!

Cheerio!
Elizabeth
aka Turtlemom

Glad for the opportunity to make a difference

By Norma Martinez

Kelly_and_Norma_ACR13    

At ACR, I saw firsthand the amazing things that the Rheumatoid Patient Foundation has accomplished, so far! It was empowering and helped me realized that so many others really do understand and care about our pain and struggles. We are not alone and there really is hope!

It was wonderful meeting Dana and the others. Thank you for all the time you put in and hard work you do! I wish I could have spent more time volunteering. Thank you (the volunteers) and Kelly for giving me the opportunity. I'll never forget it!

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by KatieB

Celebrate #GivingTuesday – Make a Difference with RPF

December 3, 2013 in Advocacy

By Shannon Ragland

Making a difference with the patient voice

In October, for the third year in a row, I was privileged to attend the American College of Rheumatology’s (ACR) annual scientific meeting as a volunteer with the Rheumatoid Patient Foundation (RPF). It is truly an honor to help represent the patient voice for people with Rheumatoid Disease (PRD) alongside a group of amazing volunteers, board members, and RPF’s founder, Kelly Young (a.k.a. RA Warrior) who inspire me so.

Kelly’s call to start the first organization ONLY for Rheumatoid Disease (RD) / Rheumatoid Arthritis (RA) has led to substantial progress in under three years. RPF board member Dana Symons did a great job covering this year’s RPF session on patient engagement and RPF research posters based upon patient-driven research for the RPF blog. Kelly also wrote more about the behind-the-scenes of getting to this point on her own blog. And this week, we're hearing from other members sharing about the reasons they've seen firsthand how important this work is.

RPF_volunteers_exhibit_ACR13

The future is OUR vision and our mission

The Rheumatoid Patient Foundation is a 501-C3 non-profit organization by patients, for patients. Our mission is to improve the lives of people living with Rheumatoid Disease.

Our vision is a world where no one suffers from Rheumatoid Disease.

To achieve this objective, we, the RPF work with patients, physicians, researchers, and other rheumatology stakeholders to address the needs of patients and to create pathways to better care for PRD. There is much more work to be done.

The Rheumatoid Patient Foundation is volunteer-based, and we rely upon the support of members and donors in order to do this important work. We ask for your help today as part of the #GivingTuesday campaign to help us continue to improve the lives of people with Rheumatoid Disease (PRD) in the coming year.

To join our efforts, kindly click here to become a member of RPF.

To make a tax-deductible end of year donation, click here.

Add your voice and help our vision become a reality. Together we CAN do more.

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by KatieB

Some Tears, and Then One Shining Hope

December 3, 2013 in Advocacy

By Shannon Young

I-SUPPORT-RPF-1Most of us have thought at one time or another what it would be like to hear the words, “It’s cancer.” We can imagine the fear, pain and physical toll on the body. We know what a dreadful disease cancer is because unfortunately, we probably know someone who has endured it. In contrast, most of us have never considered what a diagnosis of Rheumatoid Disease means. I certainly didn’t until my doctor began to suspect it. By the time he talked me into the blood test for it, I had done some research.

When the diagnosis came, I shed many tears. As I lay in bed that night, I cried because of the uncertainty. I cried because I knew that my risk of heart disease had just doubled, my risk of cancer was increased, and I knew that one of the leading causes of disability is arthritis (the most commonly known term for Rheumatoid Disease). I cried because I had learned that this disease is not something that affects only the joints, but that it is a systemic disease process, often treated with medications (including forms of chemotherapy) that wreak their own form of havoc on the body. I cried because I could not imagine living the rest of my life in the amount of pain I was in. And I cried because there is currently no cure and I have two daughters who I pray never develop it.

The one shining hope that I have clung to in the year and a half since I was diagnosed with this “invisible disease” is the amazing rheumatoid patient community – this community has been formally brought together by the Rheumatoid Patient Foundation. RPF is the ONLY organization devoted SOLELY to the concerns of patients with Rheumatoid Disease.

On this #GivingTuesday, would you please consider a donation to the Rheumatoid Patient Foundation? Click here to contribute. In case you need convincing, here are some reasons your support is important to patients:

•    The RPF is the only charity just for Rheumatoid Disease.
•    RPF is a non-profit organization by patients, for patients.
•    Our vision is a world where no one suffers from rheumatoid disease: help our vision become a reality.
•    RPF works with patients, doctors and industry to address patients' needs and create pathways to better care
•    We support patient-driven research.

Click here to become a Member - add your voice -- together, we can do more!

If you’re not convinced yet, do some research at http://www.rheum4us.org/ and then imagine what you might feel if the doctor said to your loved one: “It’s rheumatoid disease.” Thank you for considering to support us in the fight.