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Billboard Public Service Announcements for Rheumatoid Disease

May 18, 2017 in Exciting, RPF News

The Rheumatoid Patient Foundation is excited to announce the launch of a billboard campaign through Lamar Advertising, featuring public service announcements (PSAs) for Rheumatoid Disease.  By running these as a PSA, Lamar donates the billboard space to us, so RPF only has to pay the printing costs for each billboard.  We will be starting with two billboard designs -- one in Orlando and one in Chicago.  The specific location of the advertisement will vary throughout the year depending on when and where Lamar has open space in each of those markets to run a PSA.  This means, if you live in the Chicago or Orlando areas, you may see our ads in multiple locations throughout the course of the year! Follow us on Facebook to keep up to date on where you can find the billboards.

Our initial campaign will feature one ad with messaging that brings awareness to the fact that Rheumatoid Disease is not "just arthritis," and another ad focused on the invisible nature of this disease.  Check out the previews of our designs below!

Rheumatoid Arthritis billboard advertisement PSA

Rheumatoid Arthritis Billboard advertisement PSA Invisible Illness

We want to give a big shout out to Barbara at Lamar who helped us set up this program, and also to the RD patients who donated the photography that we used in these ads.  Want to see your face on a billboard? Donate a photo, and you could be next!

Rheumatoid Awareness Day Twitter Chat

February 1, 2014 in Events

Join us for a special Twitter chat TODAY, SATURDAY, FEBRUARY 1 at 10AM Eastern Time. Simply tag your tweets with the hashtag "#rheum" to join in! If you're not on Twitter, you can still follow the conversation by clicking here.

Here are some topics we will discuss:

Q1: What is the one thing you want people to know about Rheumatoid Disease (RD)?RAD-breakrooms-posters-@eprestonj
Q2: What is the biggest impact RD has on patients? Caregivers?
Q3: How would greater awareness for Rheumatoid Disease impact people's lives?
Q4: What is the biggest challenge to awareness for RD?
Q5: What is the most important question for RD research?
Q6: What is one thing you can do to educate or bring awareness in your sphere of influence?

This live chat event is an opportunity to come together from different perspectives and locations for RD awareness. If you are a patient or caregiver or work to help patients, we hope you can join in!

Don't forget, RPF is also  hosting a live chat on Facebook with Mayo Clinic rheumatologist Dr. John Davis on Sunday, February 2nd at 11am ET. Click here to join the Facebook Event.

More ways to get involved in Rheumatoid Awareness Day events - click here.

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

by KatieB

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

January 31, 2013 in Press Release

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

Patients Uniting to Overcome Misconceptions; Crescendo Bioscience® to Match Donations to Rheumatoid Patient Foundation

January 31, 2013 – The first-ever Rheumatoid Awareness Day, to be celebrated on Saturday, has already brought thousands of patients together to begin the process of educating the public about rheumatoid arthritis. Almost 6,000 have signed up to recognize the day on the Facebook page for this event, with others preparing to host local events and writing officials requesting recognition of Rheumatoid Awareness Day.

In addition, Crescendo Bioscience®, Inc. is providing a matching grant for donations to the Rheumatoid Patient Foundation (RPF), the group that established Rheumatoid Awareness Day, up to $10,000. RPF encourages both patients and the public to join this first awareness day by donating with the link http://bit.ly/give2RPF. Crescendo Bioscience is a molecular diagnostics company that offers Vectra™ DA, a multi-biomarker blood test that measures disease activity in rheumatoid arthritis patients.

The stories posted on social media have underscored the impact of the disease; some have posted about the career they enjoyed before the disease or about having had the disease since childhood. James posted, “It's such a struggle on a daily basis for those of us with this disease, and to have those around us say, ‘I know how you feel, I've got a little arthritis pain in my finger or toe or wherever.’ This is so much more than just arthritis.”

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 the same as 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, “Just today a patient posted about the severe effects of her rheumatoid lung disease saying her joints feel better than they have in years.”

Rheumatoid arthritis is a progressive inflammatory disease causing damage to joint and organ tissues, resulting in pain, frequent disability, and increased mortality. RPF gives a voice to millions of people with this disease which, despite the lack of awareness, is rather common; Mayo Clinic says lifetime risk of the disease is 3.6 percent for women and 1.7 percent for men.[1]

The Rheumatoid Patient Foundation established Rheumatoid Awareness Day as the second of February, drawing analogies between Groundhog Day and the crucial window of opportunity after disease onset for rheumatoid patients to get early diagnosis and treatment. And it falls during Heart Disease Awareness Month, highlighting the link between rheumatoid disease and heart disease. Rheumatoid patients have a higher incidence of stroke, atrial fibrillation, and silent heart attack. For more information on how to support Rheumatoid Awareness Day, visit http://rheum4us.org/rheumatoid-arthritis-awareness-day/.

About the Rheumatoid Patient Foundation

RPF is a 501c(3) non-profit organization dedicated to improving the lives of people with rheumatoid diseases such as rheumatoid arthritis and juvenile arthritis. RPF was founded in 2011 to address a significant lack of disease education, comparatively low levels of research funding, and difficulty obtaining adequate treatment. RPF is committed to creating pathways to better clinical care and disease outcomes through education, awareness, and participation in patient-centered research. For more information, visit http://rheum4us.org or follow RPF on Facebook or Twitter.

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[1] Mayo Clinic. 2011. Mayo Clinic Determines Lifetime Risk of Adult Rheumatoid Arthritis. http://www.mayoclinic.org/news2011-rst/6137.html?rss-feedid=1

 

by KatieB

The Rheumatoid Disease Awareness Ribbon

January 26, 2013 in RPF News

By Kelly Young

As part of the first Rheumatoid Awareness Day, the Rheumatoid Patient Foundation created the indigo and gold awareness ribbon. For the first time, people living with the disease called “Rheumatoid Arthritis” have their own day and a unique ribbon for awareness. The logo of the RPF is a shield created out of this ribbon, symbolizing its role in working for the needs of patients.RD colors

Here is what the ribbon colors represent for people living with this disease.

Indigo symbolizes wisdom, knowledge, and infinity. This represents the understanding and awareness that is needed for this misunderstood disease.

Gold symbolizes hope and triumph. This represents the optimism Rheumatoid patients exercise in their daily lives with this disease and the hope of a cure that they never let go of.

rd-ribbon-final-2 tinyTo download an image with the ribbon to use on social media or on your own website or blog, visit the Rheumatoid Awareness Images page here.

To purchase bottles, bags, or shirts with Rheumatoid awareness images on them visit the new RPF store page here.

by KatieB

Bringing Rheumatoid Disease Out of the Shadows

January 24, 2013 in RPF News

By David Biundo

As children, we are mesmerized by shadows. They are magical incarnations of whatever we want them to be. In some cases they were our playmate, our best friend or even sometimes our scariest enemy. One of my childhood memories of shadows comes from the game my brother and sister would play together. We would darken a room, and then creatively place lights in the room so they would cast our shadows on the wall. We would then get our favorite records, from our favorite groups playing, and then try to make our shadows look like we were a live rock band. Amazing what imaginations did before a Wii remote or Xbox Kinect. As we grow older, shadows tend to play a different role in our lives. They become a metaphor for the trials and tribulations we go through. For some, the shadows that are cast and carried through everyday life represent a burden that is often difficult to overcome. Some of these shadows we cast by ourselves and our reactions to our current situations, while others shadows are placed in our path by society. Both create their own set of opportunities to overcome which sometimes seem impossible.

For those of us who are impacted by rheumatoid disease, there are many shadows cast upon us. Living with these shadows and over coming them is sometimes harder than fighting the disease itself. Coming out of the shadows The shadows that many of us deal with include having our symptoms disbelieved and having our disease trivialized due to misconceptions about what rheumatoid disease really is.    The shadows grow longer as misconceptions and misinformation are perpetuated by the media.  As patients, many of us are cast in these and other shadows, unsure of how to overcome them, so we remain living with a disease that is destroying our bodies and impacting the way we live our lives everyday.

On February 2nd, the Rheumatoid Patient Foundation will support the first ever Rheumatoid Awareness Day, aimed at helping those with rheumatoid disease come out from behind the shadows that have been cast upon them.    It is our goal to not only give patients a place to turn to, but to also educate the public on the facts of what living with this disease entails.  It is only through awareness and education, from both patients and health care professionals that we will be able to bring this disease out of the shadows.  By doing this we will be able to dedicate more resources, establish better standards for care for all patients and hopefully find a cure.

Join us in bringing rheumatoid disease into the light. Click here for a list of ways that you can get involved.

by KatieB

ACR 2012 – Sharing the Patient Perspective

November 16, 2012 in Events, Exciting

By Dana Symons

RPF Exhibit Booth at ACR 2012 Annual MeetingThis week, several board members and volunteers from the Rheumatoid Patient Foundation traveled to Washington, DC for the American College of Rheumatology (ACR) Annual Scientific Meeting.  The meeting is held each year over several days with scientific sessions and presentations on the latest news and research in the field of rheumatology.  There is also an Exhibit Hall, where the RPF had booth space to connect with the doctors and other professionals attending the event.  Exhibiting there gave us a chance to increase awareness of the RPF and its mission, share our resources and patient survey findings, and make connections with rheumatologists and others in the industry.  Last year, the RPF exhibited at the ACR meeting for the first time, and it was a phenomenal event.  This year was just as great!

Our wonderful group of volunteers consisted of several individuals in and around the DC area, as well as several people who flew in from across the country.  Our volunteers were among the only rheumatology patients at the event.  This allowed for some really interesting conversations with the attendees, as we were able to share insights and experiences from the patient perspective.  We received a really positive response from those learning about the RPF for the first time, and it was amazing to meet with so many rheumatologists and researchers who share our goals of improving the lives of patients, improving treatment options and searching for a cure.  It was likewise very encouraging to see new research focused on RA, new treatments that have become available, and a strong focus on ways for doctors to improve treatment methods and disease management.

Limited Mobility Suit mimics stiffness and joint restriction of rheumatoid arthritisIn our exhibit booth, we also had something special: the limited mobility suit.  This is a full body suit with numerous Velcro straps that tighten to restrict joint movement and mimic stiffness and limited range of motion caused by RA.  We had two people who volunteered to try on the suit and experience a glimpse of what it’s like to live with limited mobility.  First up was our friend, Brian Reid of W2O Group.  Here’s what he said about the experience:

"It wasn't just that the suit was uncomfortable -- though it was -- it was the way it made the simple things difficult. Getting into and out of a chair was tricky. So was going up and down stairs, or reaching for my phone. But in some ways, I had it easy. The suit came off after less than an hour. And while my movements were restricted, they were restricted by nylon and Velcro, not pain."

Limited Mobility Suit - mimics rheumatoid arthritisOur second volunteer to try on the limited mobility suit was our very own Advisory Board member, Dr. John Davis.  Dr. Davis is a rheumatologist and trying on the suit gave him a unique opportunity to experience a little bit of the loss of functionality that some of his patients may have.  We had Dr. Davis try to sit in a chair with stiff knees and also had him attempt to write with fingers that could not bend well.  He was very gracious in allowing us to test his abilities in the suit, and his movements in many ways resembled those of rheumatoid patients with flaring knees, hands and other joints.

We also got some great video footage of the limited mobility suit in action, so look for that yet to come!

Many thanks to all of our volunteers who helped make our experience at ACR such a success this year!

 

Click here to view a Photo Gallery from this year's ACR Event!

by KatieB

A Consultation with Mayo Clinic Rheumatologist John Davis

November 12, 2012 in Encouragement

By Kelly Young

I sat down recently with Mayo Clinic’s John Davis to discuss some key issues facing rheumatologists and patients. I learned that he enjoys fly-fishing with other researchers in the summertime and what motivates him to work so hard the rest of the time. I’m glad to bring you his perspective and I know you’ll enjoy getting to know Dr. Davis.

Skilled and caring mentors in a noble profession

John M. Davis, III, MD is a consultant in the Division of Rheumatology at Mayo Clinic in Rochester Minnesota, Assistant Professor of Medicine, and the Research Chair of the Division of Rheumatology. His work has included significant focus on Rheumatoid Disease, understanding ways to improve care and outcomes of patients, and understanding the impact of the disease on health with an emphasis on cardiovascular disease. He spoke with me about his background and what motivates him in his career.

Both Dr. Davis’ father and grandfather were physicians. “Medicine has been part of my life always,” he said, and he always considered it to be a noble profession. His internist grandfather, an early mentor, passed away recently in Raytown, Missouri. His father is a hematologist oncologist in Kansas City, but also began as an internist. Academic experiences sparked Dr. Davis’ interest in immunology, but he is quick to add he is equally driven by the rewarding personal interaction in helping to care for people with a chronic long-term disease. “I have an opportunity to make an impact that is more than I could with acute care.”

Dr. Davis was drawn to rheumatology by both “the science and the human aspects” pointing to other key mentors such as Dr. Sara Walker in Missouri and his father who he said “is still my hero for taking outstanding care of people. My father and grandfather were early pioneers in patient-oriented medicine.”

Rewarding and challenging work

Diseases such as Rheumatoid Arthritis are challenging for doctors as well as patients. On the one hand Davis admits, “It can be very draining for a physician when a patient has ongoing pain, fatigue or ill health that does not get better despite trials of standard, available drug therapies.” “Yet,” he continues, “it is rejuvenating to channel this frustration into conducting research studies. We address these difficult challenges by taking a team approach, involving different disciplines including rheumatology, immunology, and pain management, for example.” Dr. Davis finds it rewarding “to know that even though these diseases are not curable, we strive to understand what’s wrong and to treat in ways that can profoundly help the way a person can feel and function. These diseases are very challenging, mostly an art since tests are frequently not helpful and the physician must be astute to recognize what is wrong and treat it. This is why research is so important to me. We identify what is holding us back and find new solutions to improve health and outcomes for people; so clinical work and research go hand in hand.”

With rheumatological diseases, many specialists are often involved in the care of one patient. Dr. Davis remembers an example of a lupus patient in hospital and the proverbial tug of war over decisions between a cardiologist, neurologist, pulmonologist, and an infectious disease specialist. As the rheumatologist who knew the patient and the disease best, he could clearly see what needed to be done to save the patient without further complications. “It is tremendously gratifying to have the wisdom and experience to foresee potential complications that other physicians cannot and convince the team of doctors and family to act and ultimately prevent a bad complication.”

The greatest need in rheumatology

There are several great needs right now in rheumatology, yet according to John Davis, “The most immediate is to identify prognostic tests to enable us to better understand the disease process for an individual patient. We must find better ways of tailoring the treatment to the individual patient.” He says the key is to arrive at the right treatment at the right time, “early in the disease course. Delayed treatment is bad for many reasons, not the least of which is people continue to suffer.” He also acknowledges the chance of attaining remission decreases over the months and years. “There is a high burden of ongoing suffering and ultimately tissue damage that, if we had better predictive tools, could be preventable.”

He sees tension between the greatest need and perhaps the greatest challenge: “Use of quantitative measures of disease activity in a widespread fashion would be better. Many doctors in the U.S. do not use them due to time constraints and concern that the data is not specific enough or because they weren’t trained to practice that way. But, we have mounting evidence that measuring disease activity and knowing when treatment needs to be modified helps eventually to get patients into remission.”

A cure for Rheumatoid Disease

Dr. Davis believes we will see much progress toward a cure in our lifetimes. “We may well see a cure. Over the next ten to twenty years, we may understand what leads to autoimmunity especially with a common disease like Rheumatoid. And then we could understand how to induce tolerance as we understand better the tissue antigens involved and the mechanisms of immune regulation that we could perhaps augment.” He believes that resetting the immune system to not attack tissues is one feasible option to achieve self-tolerance. “These are big ideas that people are working on.”

Causes of low funding for Rheumatoid research

I asked Dr. Davis why RA has historically gotten so little attention from the scientific community and dreadfully low research funding in the U.S. He told me, “I think the reason funding is historically lower is that, first, it took many years for the rheumatology community to become aware and embrace the systemic aspect of the disease in terms of the greater mortality. There is a growing awareness of cardiovascular mortality, malignancies, infections, and changes in body composition. So that was under-recognized and people think of ‘arthritis’ as not that great of a problem and that it’s just something you have to deal with.”

“And the disease has also been perceived as rarer than it actually is—we have found that in Rochester, Minnesota, the lifetime risk of RA is 3.6% for women and a 1.7% for men. So funding has not risen to the levels of some other chronic diseases. We do need the voice of patients to lobby for awareness.” Dr. Davis believes that recognition of the toll on patients’ and families’ lives, and on communities financially, is one way to get the world’s attention.

High hopes for the new Rheumatoid Patient Foundation (RPF)

Dr. Davis plays a valuable role for the RPF. He told me: “As a member of the Advisory Board and an active collaborator in activities of the foundation, I believe RPF plays a very valuable role in advocating for people affected by Rheumatoid Disease. Led by patients, RPF can play a great role in providing patient support, education, community, and advocacy. RPF will combine grass-roots advocacy with Congress with also partnering with physicians and researchers. They will help identify what the problems are and identify treatment strategies that are acceptable and appropriate from the point of view of the people who are actually affected.”

Changing the name of Rheumatoid Arthritis will benefit patients and physicians

Dr. Davis believes changing the name of Rheumatoid Arthritis will have a positive impact on patients and the profession. “There is a need to change the name of RA. I’ve learned from patients and others to have a growing appreciation that the words ‘Rheumatoid Arthritis’ do not do justice to this disease.” He explains that a name ought to be identified which is more reflective of the systemic nature and the mechanisms of the disease. He also believes that updating the name of RA will increase awareness of the disease: “We will be able to enhance awareness of the disease, what it is, and what it means to people.”

According to Davis, patients and doctors will benefit directly from the name change because “It will help doctors and patients to be able to communicate better. It will also be easier for me to teach about the disease to medical students if there is a name that lives up to the full aspects of the disease.” Another benefit could be increased research dollars because “a name that’s more representative of the disease will make it easier to advocate for research funds.” Both patients and doctors will benefit when “we advocate for a treatment to be approved by payers who cover costs,” he says. “It would be to our advantage if the name reflects what we are dealing with and is not mired in historical misconceptions about the disease.”

Dr. Davis says the RPF has a critical role to represent patients as a collective voice in speaking to physicians and other stakeholders to attain a better name. He does not think there will be much opposition from the medical community to the change: “I don’t think many physicians will argue that the current name is adequate. If we clearly state the need and rationale, it can clearly be done.” He points out precedent for changing names of diseases for the right reasons. “Not much will stand in the way, but it will take time. It does need to be changed and it will be changed. Ideally soon.”

A talented doctor – and a dad

Dr. Davis makes me smile when I hear him talk about hope of a cure and his family legacy of patient-centered care. But, he makes often someone else smile – his daughters! Another of the doctor’s talents is singing, having performed with choirs and a band in previous years. These days, he sings in the car while driving his girls to school. He laughs as he admits they often ask him to stop.

 

by KatieB

Experiencing the Limitations of Rheumatoid Disease

November 9, 2012 in Events

Limited Mobility Suit
Rheumatoid Patients: Have you ever wished that your doctors, friends, or family could experience first-hand just a little bit of what it's like to live with Rheumatoid Disease?

Health Professionals and Caregivers: Have you ever wondered what it really feels like to live with Rheumatoid Disease?

This year, at the American College of Rheumatology Annual Scientific Meeting, the Rheumatoid Patient Foundation will be providing that opportunity.  At our booth in the Exhibit Hall, we will have with us a "limited mobility suit", designed specifically to mimic the limited range of motion and mobility that many patients with Rheumatoid Disease (RD) experience every day.  This is a full body suit, with numerous straps that tighten to restrict joint movement.

Those who live with RD know all too well the frustrations that come with limited mobility, which can make some of the most simple and routine tasks near impossible.  Picking up a cup of coffee.  Washing your hair.  Turning your car key in the ignition. Getting out of bed.  Standing up from a chair.  Once strapped in to the limited mobility suit, one can experience how difficult it really can be to perform some of these tasks with stiff joints that are difficult to bend.

Our hope is to offer the opportunity for ACR attendees to begin to understand some of the challenges RD patients face.  Just imagine adding some pain and fatigue into the mix on top of the limited mobility and it will start to paint an accurate portrait of what many patients experience.  To those who are attending ACR this year, we hope that you'll stop by our booth -- #510 -- to see this in action (or try it on yourself!) and learn more about patient experiences.  For the rest of you, we hope to capture some video footage of the limited mobility suit to share with you!