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ACR 2018 – Coming Full Circle

November 6, 2018 in Advocacy, Awareness, Encouragement, Events

by Dana Symons

Seven years ago, I had my first volunteer experience with the Rheumatoid Patient Foundation. It was also my first time attending the American College of Rheumatology Annual Meeting, which was held that year in Chicago. It was an experience that changed my life. It was eye-opening and exciting as I saw so many people from multiple disciplines coming together with the goal of helping people with rheumatic diseases. It was also where I got to meet some long-time internet friends face-to-face, including RPF Founder, Kelly Young, several other patients, and some rheumatologists that I knew from around the globe. The experience gave me hope that by working together, we really can improve the lives of people with rheumatoid disease and work toward a cure.

This year’s ACR Annual Meeting brought us back to Chicago – and me to my sixth time attending this annual conference with RPF. Looking back, it’s fun to see the progress that has been made since that trip seven years ago. Back then, we were just about the only patients to be found at the conference. Over the years, that has begun to change and the ACR has been more open to involving patients in the conference, even having a special section of patient poster presentations in the poster hall, and having more conversations and sessions that are patient-centric.

There seemed to be a general attitude shift, where a number of years ago we received push back from some people who seemed to think that we had “arrived” at the pinnacle of what was needed in rheumatoid disease treatment and that patients were doing just fine. Whereas this year, we received no push back, and instead were embraced with open arms by other attendees (doctors, researchers, biotech and pharmaceutical employees) who see the need for more and better resources for people with RD and for heightened education and awareness of the true nature of this systemic disease. We offered free copies of the book, Rheumatoid Arthritis Unmasked, and educational “Treat to Target” posters for doctors’ exam rooms. We had an overwhelming response, with requests for resources from doctors in nine different countries!

Other things have changed, too. New drugs have come on the market – including new oral medications, auto-injector pens for methotrexate, and biosimilars. Biosimilars have been a huge topic of conversation for the last few years. A biosimilar is kind of like a generic version of a drug, except that since these medicines are made biologically rather than chemically, they are not exactly the same as the branded drugs. They offer a potential cost savings and theoretically similar response rates as their branded counterparts – though there’s some debate about whether the branded and biosimilar drugs would work the same way in a particular individual. There are also new drugs still in the pipeline that offer future hope to people who have not responded to current treatments on the market.

On the whole, this year was a very positive experience, and it feels like we have come full circle back to Chicago, and back to a place of hope and possibilities. We set things in motion in 2011 and have made some strong headway toward our goals of patient involvement, recognition of RD as not just arthritis, and support for our educational and awareness campaigns. There is lots of work yet to do on all fronts, but it seems that in many ways, things are headed in the right direction. Let’s fight together to keep this momentum going until we reach our final vision: a world where no one suffers from rheumatoid disease.

Eddie’s Story & Volunteer Experience

October 28, 2018 in Advocacy, Events, Stories

We at the Rheumatoid Patient Foundation believe that our personal stories are powerful tools of education and inspiration. We have asked several of our volunteers to share a part of their journey and volunteer experience with us after joining us at the American College of Rheumatology Annual Meeting. If you are interested in sharing part of your story, please click here.

Eddie Franklin - Volunteer Experience at ACR 2018

I had a fantastic time at the ACR. I did not realize that there were so many people who have Rheumatoid Disease, along with so many Rheumatologists and prescription drugs. I thought this was going to be somewhat local, maybe in a tri-state area. To see all of the rheumatologists from all over the world was amazing to me. It was very educational to learn that Rheumatoid is a Disease and not just Arthritis. Besides finding out that RD affects joints, but also tendons, ligaments, bones and muscles. I did not really understand this.

It was fun talking with the doctors, drug companies, and anyone else related to Rheumatoid Disease. Anita (my wife) and I enjoyed explaining what the Rheumatoid Patient Foundation was, that I have RD, and getting them to sign up for a free copy of [RPF Founder] Kelly’s book (Rheumatoid Arthritis Unmasked) and/or a poster for their offices. It was a great learning experience.

 

 

Eddie's Story:

My name is Eddie Franklin. I am blessed to be married to Anita for a little over 12 years, I have two step children, Jonathan and Dana, along with two grandboys, Gary and Clark. I live in a small farming community in Charlotte, MI. My wife and I enjoy motorcycles, the S.O.A.R. motorcycle ministry which we are proud to be members of, along with serving the Lord whenever possible. We love beach vacations when we can get away.

I was officially diagnosed with Rheumatoid Disease about four years ago, maybe a little longer, but I need to back my story up just a little. I was involved in a serious car accident back in February, 1986. I have been suffering with a Traumatic Brain Injury (TBI), along with Seizures. I have developed different medical problems ever since. About eleven years ago, while living in Livonia, MI, my joints started swelling and really hurting. I was in a tremendous amount of pain. My fingers and ankles really started to bother me. I was taking between 6 to 8 Aleve a day. I needed something for the pain. I thought it had something to do with my car accident.

My wife talked with her daughter Dana, my stepdaughter, who has RD. She recommended her rheumatologist when she lived in the area. I went and he did the typical tests and said I did not have Rheumatoid Arthritis. He told me not to take too many more of the Aleve a day because it could eventually hurt my stomach. All I know is that there was something wrong.

As days went by, I was feeling worse. My hands, feet, ankles, knees, and hips were all starting to hurt. Again, I just thought this was from my car accident. It was difficult for me because I was having problems holding up my motorcycle. I dropped it a few times. My ankles just wouldn’t let me hold it up. I was starting to think I was going to have to give up on one of my true passions, riding. We have since moved to Charlotte, MI. The problems in my joints were hurting me really badly. Some of my fingers are bent and my joints hurt. Sometimes my hands even go numb. Again, Anita talked with Dana about my problem. She said that I have RA. That it can go undiagnosed in the blood work. She recommended her doctor in Grand Rapids. He agreed with Dana, that I had RA.

He started giving me methotrexate and prednisone. After 3–4 weeks, I could not believe the difference. I had movement in my joints, something I haven't been able to do without pain. Do I still have pain, yes, but not near as much. About 4 months later, the methotrexate was not working like it did. My doctor changed my medication to Humira. This time it worked for over 7 to 8 months, maybe a little longer. When it slowed down working, he changed it to Enbrel. Again, maybe 7 to 8 months and I still started to have pain. Now I am on Orencia. I still suffer with pain, but it seems to be working.

I am grateful to the Rheumatoid Patient Foundation. I just did not realize the meaning of Rheumatoid Disease. I learned that arthritis is just one part of the disease. After working at the ACR in Chicago, I feel I am starting to be better educated on RD and now if I have any questions or want to share my experiences, I can.

I am thankful to my wife Anita and stepdaughter Dana. Both are very intelligent women who do their homework. They do not take no for an answer. Do I still ride my motorcycle and serve in the S.O.A.R. motorcycle ministry? Yes I do. I did have to switch from two wheels to three. But, even though I am still in some pain, I am able to serve the Lord.

2018 Scholarship Winners

October 27, 2018 in Advocacy, Exciting, RPF News

For the past few years, the Rheumatoid Patient Foundation has run an annual scholarship program to support students affected by Rheumatoid Disease. Our goal has been to expand the program each year. This year, we have upped our Scholarship Program to award five $1,000 scholarships to students who are affected by Rheumatoid Disease. We'd like to take a moment to thank everyone who applied for our Scholarship Program. We received many wonderful essays and applications. Our judging panel has chosen our five winners this year, and we'd like to introduce each of them to you. Please join us in congratulating these five individuals!

Michelle Carrera (Miami, FL)

Michelle was diagnosed with Juvenile Rheumatoid Arthritis at age 11. Her experience with the healthcare system has made her committed to pursuing a career aimed at improving quality of care and access to care for underserved communities. She is currently pursuing her Master’s in Public Health with a concentration in Health Policy & Management.

Lauren DeMarco (Charleston, SC)

I am from Charleston, SC and am currently a freshman at Wake Forest University. My academic interests include English, Spanish, and visual art. Outside of the classroom, I love to stay active, participate in community service, and spend time outside.

Maxwell Nelson (San Jose, CA)

Maxwell has lived most of his life in Minnesota, where he earned his Bachelor of Arts degree in political science from the University of Minnesota. Maxwell was diagnosed with polyarticular juvenile idiopathic arthritis at age 17 and has benefited from immunosuppressive drugs. He now lives in San Jose, California and attends Santa Clara University School of Law in Santa Clara, California. Maxwell plans to focus his studies on international law and public interest law.

Ashley Poolman (Hillsboro, OR)

My name is Ashley and I was diagnosed with JRA at age 13. Fast forward 9 years, I am now enrolled in a doctoral program for clinical psychology at Pacific University in Oregon. Within clinical psychology, I am studying health psychology because I am especially interested in how physical health and mental health influence each other. I am also adding an emphasis in Latinx psychology to be able to serve Spanish-speaking populations. I am grateful to the Rheumatoid Patient Foundation for letting me share my story and I hope to use my experience with arthritis to help those in similar situations.

Elizabeth Roach (Elgin, IA)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My name is Elizabeth Roach. I have had Juvenile Rheumatoid Arthritis since I was 14 months old. I am currently in my first year of graduate school for Child Life at Edgewood College in Madison, Wisconsin. I completed my undergraduate degree at the University of Iowa in Therapeutic Recreation. I am really looking forward to my future working in hospitals to help children like me who have chronic illnesses as a Child Life Specialist.

Many thanks to all who applied to our Scholarship Program this year. Congratulations to this year's winners, and we look forward to seeing what your futures hold!

A special thank you to our sponsor, Crescendo Bioscience, for making this Scholarship Program possible!

Crescendo Bioscience (a subsidiary of Myriad Genetics) focuses on enabling more effective management of autoimmune and inflammatory diseases by providing quantitative, objective molecular tests and disease information services to rheumatologists and patients. Crescendo Bioscience’s current products are: Vectra® DA, the only multi-biomarker blood test for rheumatoid arthritis (RA) disease activity, and MyRA, a free mobile app designed to empower people living with RA to regularly track multiple aspects of their RA and easily share the information with their physician. www.VectraDA.com www.TrackMyRA.com

RD Profile: David St. Martin

February 20, 2018 in Advocacy, Interviews, Patient Input, Stories

By sharing our own stories, we can offer hope and encouragement for others and let people with Rheumatoid Disease know that they are not alone in this fight. If you're interested in sharing your story, please visitour story page.

First, tell us a little bit about yourself.

My name is David St. Martin and I am from Shrewsbury, Massachusetts. When I’m not working full-time, I enjoy spending time with my daughter and participating in outdoor activities such as kayaking, sailing, scuba diving, indoor rock climbing and more. Throughout childhood, I was in and out of hospitals and in and out having to use a wheelchair, graduating high school as a wheelchair user.

When were you diagnosed with RA/Rheumatoid Disease?

I was diagnosed with systemic, polyarticular Juvenile Rheumatoid Arthritis at age 2, more than 4 decades ago.

What was your first symptom?

The onset of my disease appeared as rash on my trunk, along with high fevers and joint pain, primarily in my hands and knees. Severe joint deformities occurred so rapidly that I became wheelchair bound.

What is the biggest way rheumatoid disease has affected your life?

I consider myself lucky. Lucky that I was so young when diagnosed. Since I have experienced pain and deformities throughout my life, I am unable to fully imagine my life without the disease. On a daily basis, my mobility is compromised, my activity can be limited, and daily pain fluctuates. A person with Rheumatoid Disease quickly becomes acutely aware of their body and how weather, activity, diet, sleep and other variables may affect it – sometimes on an hour-by-hour basis.

What has been your experience with treatments for rheumatoid disease?

Back in the late 60s, early 70s, my treatment consisted of gold injections, aspirin and experimental anti-inflammatory medications in conjunction with rigorous physical therapy consisting of stretches, heat/cold therapy and paraffin baths. In my teens, prednisone was introduced to mitigate pericarditis and surgeries began in my 20s. Surgeries consisted of but, not limited to, total knee and total hip replacements. Today, my disease is sufficiently controlled by prescription pain medication and an over the counter anti-inflammatory.

What do you want the public to know about rheumatoid disease?

Rheumatoid Arthritis is not a bone or joint disease. It is not your grandparent’s deformed hands or the sports person’s sore knees. RA (or Rheumatoid Disease) is a chronic, systemic autoimmune disease in which the body’s immune system attacks organs and joints causing damage that may result in severe pain, deformity, organ failure and sometimes death. Remission is rare and currently there is no cure. Millions of adults and tens of thousands of children, including infants in the United States have a form of rheumatoid arthritis (RA).

Personally, Rheumatoid Disease has affected most of my joints from my neck to my toes and has also involved my heart and eyesight.

How have you worked to overcome challenges presented by rheumatoid disease?

I consistently try to not let my disease define me. I do my best to live like someone who just happens to have RD. Admittedly not well, I try to eat healthy, sleep well and follow my numerous physician’s recommendations. I also push myself to experience life as best I can. Several years ago, I decided to change my “disability” into “ability” and participate in outdoor activities. Working with several organizations that assist the disabled, I have had the opportunity to sail, kayak, rock climb, water ski and even became certified in Scuba Diving.

What encouragement or advice would you give to someone who is newly diagnosed?

Do your best to not dwell on the past. Try not to focus on what you have lost, instead focus on what you are still able to do. Try to accept your new “normal”. Do not be afraid to ask for help. Talk with a counselor, family, clergy and friends. Every day, try something new. Whether it’s adventurous as kayaking or as simple as getting out of bed. Rheumatoid Disease isn’t the end but, it is a new beginning.

To learn more about David and how's he's turning his "disability" into "ability", visit his website: http://davidstmartin.com/

RD Profile: Minister Darnel McMillan

February 19, 2018 in Advocacy, Interviews, Patient Input

RPF sees the importance and value of sharing our own unique stories with rheumatoid disease. We love highlighting personal profiles on our blog to show the real people who are the face of this disease. If you're interested in sharing part of your RD journey with us, please contact us.

First, tell us a little bit about yourself (name, where you live, interests, hobbies, etc.)

My name is Darnel McMillan. I was born in the Bronx, and am living in the Bronx but have lived in 4 of the 5 boroughs for about 10 years or more each. My passion is the study of religions and the Christian faith. My children are either college grads, in college or on their way to college this year (2018).

When were you diagnosed with RA/Rheumatoid Disease?

I believe, if memory serves me correct, 2014.

What was your first symptom?

Pain in my right ankle, right knee, right elbow, right wrist and both shoulders.

What is the biggest way rheumatoid disease has affected your life?

It kept me from financial gain and the lifestyle I enjoyed.

What has been your experience with treatments for rheumatoid disease??

As long as I take the medications, my pain and/or discomforts are minimized to a certain degree. As time goes by, I notice my abilities continue to diminish. Keep in mind that I have RA throughout my body, not just in a particular area or areas.

What do you want the public to know about rheumatoid disease?

RA is extremely painful, incurable and should be place in the same category as cancer and all other high profile diseases for funding. Let's find a cure.

How have you worked to overcome challenges presented by rheumatoid disease?

Exercise, if possible, and wake up each day believing they have found a cure.

What encouragement or advice would you give to someone who is newly diagnosed?

Take your medication as prescribed; ask your doctor questions; voice your concerns; and live each and every day as you would normally.

Thank you, Min. McMillan!

Billboards for Rheumatoid Awareness Day

December 18, 2017 in Advocacy, Awareness, Exciting, RPF News

Rheumatoid Awareness Day is February 2nd! This year, we are doing something BIG. Really, big. I'm talking rheumatoid awareness messaging in HUGE letters on billboards across the country! Early in 2017, we launched the first ever Public Service Announcement campaign for rheumatoid disease through the help of Lamar Advertising. Through that program we have placed physical billboards in several major cities across the U.S., including Chicago, Orlando, Kansas City and Seattle. The billboards are run on donated space from Lamar, so that all we have to pay for is the printing cost to get our messaging onto the vinyl. The printed vinyls are good for about a year and will go up and down around these cities as space becomes available.

However, with this being the digital age, we are now also in the world of digital billboards. Besides running our PSAs throughout the year, Lamar has already gotten commitments from over 40 different cities to run digital billboards supporting Rheumatoid Awareness Day, in nearly 200 digital billboard locations. Phoenix and Kansas City also started running digital awareness ads for us. Check out the images below that are running and will be running across the country. We'll also post a list of participating cities below and update that as more are added. A huge thank you to Lamar Advertising (especially Barbara who has coordinated all of this for us). If your city is listed below, be sure to thank your local Lamar office for their support!

Want YOUR face to be featured on a billboard? All of the images we use are donated photos from actual rheumatoid patients. Click here to donate your photos for RPF's use.

RHEUMATOID AWARENESS DAY ADS

NEW SEATTLE BILLBOARD

 

PHOENIX DIGITAL BILLBOARD

 

LIST OF CITIES/REGIONS RUNNING RHEUMATOID AWARENESS DAY ADS

Abilene, TX
Amarillo, TX
Arlington, TX
Atlanta, GA
Austin, TX
Beaumont, TX
Billings, MT
Boston, MA
Bridgeport, WV
Bristol, TN
Brownsville, TX
Brownwood, TX
Cape Cod, MA
Cedar Rapids, IA
Central OH
Cleveland, OH
College Station, TX
Columbus, MS
Corpus Christi, TX
Dallas, TX
Dayton, OH
Daytona Beach, FL
Decatur, IL
Des Moines, IA
East Missouri, MO
Green Bay, WI
Hammond, LA
Harrisburg, PA
Hannibal, MO
Indianapolis, IN
Jackson, MS
Johnson City, TN
Kingsport, TN
Lake Charles, LA
Lancaster, CA
Laredo, TX
Las Vegas, NV
Lexington, KY
Los Angeles, CA
Lubbock, TX
Madison, WI
Midland, TX
Milwaukee, WI
Mobile, AL
Monroe, LA
New Hampshire
New Mexico/El Paso
New York, NY
Ocala, FL
Odessa, TX
Oklahoma City, OK
Omaha, NE
Phoenix, AZ
Pittsburgh, PA
Providence, RI
Rapid City, SD
Rockford, IL
Rocky Mount, NC
Salem, OR
San Angelo, TX
Temple, TX
Toledo, OH
Topeka, KS
Tulsa, OK
Tyler, TX
Victoria, TX
York/Lancaster, PA

A Rheumatoid Arthritis Plateau of Complacency?

November 19, 2017 in Advocacy, Important

by Dana Symons

I attended the American College of Rheumatology (ACR) Annual Meeting for the fifth time this year. This is special, because it meant that I got a neat little ribbon for the bottom of my name badge. It's also special because it means that I have had this amazing opportunity five times -- to convene with rheumatology experts from around the globe to hear about the latest research, the newest treatments and clinical practices.

I first attended the ACR Annual Meeting in Chicago in 2011, as a part of the first exhibit booth put on by the Rheumatoid Patient Foundation. I cannot even begin to describe the feeling I had the first time I met with doctors and researchers and industry professionals and other rheumatoid patients face to face as we discussed our mutual goals of earlier diagnosis, improved awareness, better treatments (even a cure!) and enhanced patient care. As I stood with doctors from Germany, India, Ireland and Columbia who I had known only from Twitter, it was surreal. It was also the first time I got to meet our very own RA Warrior, Kelly Young, in person. Since then, I have attended the ACR events in 2012, 2013, 2016 and 2017 -- each one making a profound impact on my view of rheumatoid disease (RD) and what changes need to happen to improve the lives of patients.

 

"Tweet-Up" at my first ACR in 2011 -- made a profound impact!

Over the past couple of years at ACR, I seemed to notice a trend. There are tons of scientific sessions discussing a multitude of topics that affect those practicing in the field of rheumatology. However, it seemed that there were fewer talks being given specifically on rheumatoid arthritis. Perhaps that's just my perception and I'm wrong -- I did not make any attempt to categorize and count the sessions over multiple years! Perhaps it's because we had several years in a row with big news -- new drugs coming to market, new biomarkers being discovered, new recommended guidelines from the ACR, including diagnostic criteria and Treat to Target initiatives -- followed by years with less news. Sure, there are biosimilars and a few new drugs in the works, but nothing seems completely novel. There was certainly still a plethora of research, but, still, the emphasis and enthusiasm for progress with this disease did not seem to be there. Perhaps everyone is just waiting for the "next big thing." For whatever reason, to me there seems to be a sort of plateau. And plateaus are dangerous.

It's the serious weight loss regime that can't get you past the first five pounds. It's the career progress that suddenly halts at a dead end job. It's the relationship that blossoms, and then grows stale. And, speaking from experience, sometimes, it's as far as getting 2/3 up the mountain you wanted to climb, past the miles of steep winding switchbacks -- into the lower basin. While pretty, with its streams and waterfalls, and tempting with its flat path for easy walking -- if you stop at this plateau and don't keep going, you will never reach the pinnacle – you will stay on the plateau of complacency and never know that which is truly spectacular.

This is the view you miss when you don’t push yourself to the peak!

A plateau means you've made progress, but you haven't reached the end.

There has been significant progress in treating RA / RD in the past decade or two. Biologic medications have been a game changer for many. New treatments targeting different pathways, new biomarkers indicating disease activity and helping diagnostic and prognostic efforts and a shift toward more patient-centric care are all very positive things. However, there remains a large portion of people with rheumatoid disease (PRD) that is unresponsive to any available treatment, and the mortality gap still exists. Just because we have made progress, it doesn't mean it's time to stop and call things "good enough." Just because some patients are doing well who would not have been 20-30 years ago, doesn't mean we ignore the patients who still are not doing well.

There is a pervasive sense that, on average PRD are doing well, and we can all put our feet up and relax a bit. The problem with that thinking is that there is no "average" patient. The statistical mean of a group of people may be helpful for exhibiting overarching trends, but is not helpful to an individual. It does not address the concerns of a single person, who may, in fact, not be doing well. We still have a long ways to go in rheumatology, with yet a poor understanding of how the disease even develops, functions and evolves. Until we are able to understand this disease better, to screen and diagnose early, to universally recognize and treat the systemic nature of RD -- we will never be close to being done. I say "we" because I mean all of us: patients, caregivers, doctors, nurses, researchers, pharmaceutical and biotech companies...we all play a role in advocating for better research funding and proper attention to this cruel disease. I am here to remind you that we are not done. Now is not the time to give up. Now is not the time to plateau. Now is the time to build upon the momentum that we have and continue to fight until we live in a world where no one suffers from rheumatoid disease.

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