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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.

Skydive Fundraiser Success & Follow-Up Interview

September 17, 2017 in Events, Exciting, Fundraiser, Interviews, Patient Input

As you may recall, Rheumatoid Patient Foundation member, Anja Gilmour, set out to do a charity skydive benefitting RPF earlier this year. Through her fundraising efforts, she was able to raise over $2,600 for RPF! Way to go, Anja! The skydive took place in England in August, and you can view a video of her jump below. After the fundraiser was over, we wanted to do a follow-up interview with Anja to hear more about her experience in organizing a fundraiser, and as a way to offer some encouragement and advice for anyone else who is interested in setting up their own fundraising event. Check out Anja's skydive video and interview below!

First, tell us about your experience of doing another skydive -- but this time at 15,000 feet. Was it scary? Fun? Both?

I guess you could say a little of both. But, as I had done this last year (though at 10,000 feet), I knew what to expect so I was probably more excited. I was also really excited about not only having my instructor recording the experience via his wrist cam, but having a photographer jump out with us to take footage from another vantage point. Free falling at 125mph and having another person (the photographer) come so close to you that you could touch him was amazing! I do remember, though, that when the plane kept climbing and climbing before it was time to exit, I was thinking "okay, I think we must be at 15,000 feet already!" It's a long way up! Another special experience on that day was that there were many clouds so far below us that it definitely gave me a different and even more beautiful perspective during the free fall. The company I jump with in the UK, GoSkydive, made this experience so wonderful for me as they did last year. They are very professional, supportive of people who are jumping for a cause and are fantastic in making you feel safe, secure and confident. The same instructors and personnel were there as last year which is a sign that they must be doing something right and you can definitely see that on the faces of people who had just done a jump!

What were some of the challenges you faced in running a fundraiser?

Well, when you work full time, are having periodic problems coping with your RD, and are trying to be successful at a fundraiser, it can be challenging. I worked very hard for this fundraiser but can honestly say, I would do it again without hesitation! Though I'm average at using the computer (but primarily for my bookkeeping business), I had to learn more about social media, how to do a website, etc., and find different ways to keep people interested and engaged. Another challenge was fundraising for two different charities in two different countries, though both having the same goal for Rheumatoid Disease issues. I ran into many roadblocks trying to use the usual fundraising tools such as JustFundMe, GlobalGiving, GoFundMe, Crowdfunding, etc., as I could not get any of them to work with me in having two different entities in two countries. It was quite frustrating. So because of this, I ended up directing individuals who wanted to donate to each charity's donating page, and found that many people had a hard time navigating this via internet, which is something you don't want a potential contributor to have a problem with.

What was the most fun part about doing a fundraiser?

Getting to know you, learn more about RPF, the people of the UK organization, NRAS, and being so excited that I found both organizations to fundraise for, and to see that there are a lot of people trying to get more awareness out there about this very misunderstood disease. It was also a "buzz" for me to hear when someone wanted to contribute (or did contribute) to a cause that is so important to me. Also, if I can be selfish here, doing the actual skydive was such a thrill for me! There was a brief moment during my free fall that I thought "Wow, I'm doing this for my fundraiser and how wonderful!" I am really hooked on skydiving now, though my husband thinks I need therapy! But, as one of my friends so correctly said the other day, "no, I think skydiving IS your therapy!" I am already making plans for my next jump in 2018.

What kinds of reactions did you get from people when you told them you were going to do a skydive to bring awareness to rheumatoid disease?

The reactions were all positive. I do have to say my rheumatologist and spinal surgeon think I'm nuts (I'll have had a spinal fusion after this blog is posted!), though both approved me doing the jump. My family and friends were very excited that I was going to do this and were proud of me and let me know that doing it for a cause I cared about and that affects me greatly was truly a wonderful thing. I didn't get one negative comment and felt very fortunate for all the support. My biggest supporter was my husband, Alastair. He never complained once how much time I spent on the fundraiser and was such an emotional strength to me during times of difficulties, whether there were problems with some of the fundraising aspects that I spoke to him about, or having issues with dealing with my RD, but most importantly, supporting me in my love for skydiving.

What unique experiences and opportunities did you come across as a result of doing this fundraiser?

Oh my goodness, there were so many. First and foremost, I think that this fundraiser actually benefited me more than anything else. It got me in contact with people who also suffer from this disease and helped me feel that I was not alone in dealing with it. Though I have tremendous support from friends, family and my doctors, if you don't have RD that's been pretty aggressive and hard to manage such as mine, you really can't understand the daily challenges. As your new campaign of billboards is going up around the country, it is true what they say on them: RD is "An Invisible Disease". We who suffer from this disease may "appear" to be just fine at times when we really aren't. And, I think that many of us have learned how to "hide" our symptoms, which actually we shouldn't do. Through this fundraiser I have finally learned not to "pretend" I'm okay when someone asks, "how are you doing today?" If my day is bad, I'll now say, "I'm not doing so RD is acting up terribly". And now when I say that, I don't feel guilty anymore. It's actually been liberating and nothing to be ashamed of.

What would you change in your strategy or process if you did another fundraiser in the future?

That is probably one of the hardest questions! I really don't know what I'd do differently. I tried very hard to get local media involved, UK media involved and it proved to be very unsuccessful. And this was a disappointment. Though, saying that, I currently have a local health show news person that is very interested in this story and would like to do a segment! Maybe one thing I would change would be to have more people helping me as I did this all on my own, and that was quite exhausting. But, I feel I did the job I set out to do and am pleased with the results.

What advice would you give to someone else who is interested in organizing a fundraiser?

Make sure you are doing a fundraiser for a cause you truly believe in, because people will see your passion and desire to do something good. Make sure to go into it 150% and nothing less. I think passion is the key word here. You must be passionate about fundraising for a cause. And you must do something along with the fundraising that you thoroughly enjoy to get people interested and for you to enjoy along the way, e.g., me skydiving.

Thank you, Anja, for all your hard work in bringing rheumatoid disease awareness to new heights! If YOU are interested in starting your own fundraising event, please contact us!

Clinical Trial for People with Rheumatoid Disease

February 2, 2017 in Events


Join us in the search for new treatment options for RA

For some people with moderate or severe Rheumatoid Arthritis (RA) symptoms, medications that have traditionally been used for the treatment of RA may not work well enough or may cause unwanted side effects. This study is for people whose RA has not responded well enough to previous treatment with methotrexate, and will be comparing the investigational medication with adalimumab (an approved treatment for RA) and placebo (which looks the same as the investigational medication, but contains no actual medication). The investigational medication blocks a certain protein involved in the function of immune cells, and may help to reduce inflammation and damage to the joints caused by RA.

If you live with RA, are taking methotrexate, and would like to learn more about a study, please click here.

Learn More

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


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.

2017 Rheumatoid Awareness Day Twitter Chat

January 18, 2017 in Events



Add your voice and join in the conversation this Rheumatoid Awareness Day!

WHAT: A special #rheum Twitter Chat and Q&A session with rheumatologist, Dr. Paul Sufka (@psufka). Participants will have the opportunity to connect with one another, as well as ask questions to Dr. Sufka.

WHEN: Thursday, February 2, 2017 -- at 5pm EST (10pm GMT)

WHERE: Join us on Twitter, using the hashtag #rheum. To easily join the conversation, visit the following Tweet Chat link:  If you don't have a Twitter account, you can sign up for free or just follow along at this link.

WHY: Rheumatoid Awareness Day is a special day dedicated to promoting education and awareness of Rheumatoid Disease. A Twitter chat offers a great opportunity for patients, caregivers and healthcare professionals to join a common conversation around this disease and provides a platform to share educational links and resources.

For more ways to get involved in Rheumatoid Awareness Day, click here.

Unique Fundraiser: The Sky’s the Limit!

December 7, 2016 in Events

Skydive fundraiser for the Rheumatoid Patient Foundation
We love it when our members create unique fundraising events that really tie into their own identities and passions. With a little creativity, any interest or hobby can be tied into an activity to raise funds for RPF -- the sky is the limit! We'd like to introduce you to one of our members who took this idea quite literally.

Meet Anja. Anja contacted RPF in relation to a Sky Dive event she had been planning for the summer of 2017 in the UK. Her idea was to turn a sky dive into a fundraising event, benefiting the Rheumatoid Patient Foundation and the UK-based National Rheumatoid Arthritis Society. But rather than us tell you about it, we want you to hear directly from her what she's doing and why.

Interview with RPF Member, Anja Gilmour:

RPF: Thank you, Anja firstly for reaching out to RPF and thinking of us as one of your charity partners--and also for taking the time to share a little more with us. Firstly, can you tell us a little about yourself?


Anja and her husband, Alastair.



Hello! Thank you for including me in your blog post. I’m very excited to be doing this charity fundraiser for RPF!

I live in Palm Springs, California, with my husband, Alastair. I have three grown children, Jessica (age 33), Ryan (age 30) and Jonathan (age 26)… grandkids yet, but do have a grandcat (Turbo), two granddogs (Gizzie and Moe) and a grandhorse (Sophia)! Another special person in our family is Jonathan's girlfriend, Dana.




Anja's 3 kids, plus her son's girlfriend.

I am an independent bookkeeper and work from my home office. When I'm not working, I love to do art, swim, read and play challenging online word games with my very hard to beat Mother! My husband and I have been married for 10 years. He is a PE teacher at a private school, but until this year, had been teaching 4th grade at the school for the last 30+ years. That is where I originally met him as he was my children’s 4th grade teacher. My late husband passed away 14 years ago after a long battle with cancer and after a couple of years, I started dating Alastair. At that time I worked at the school as the Business Manager so we were in constant contact with each other and after spending time with him, discovered we had a lot in common. My kids were shocked when they found out but extremely pleased as they love Alastair and he is a wonderful step-dad to them.

My Mother, Roma, (who is from Scotland) lives in Eugene, Oregon, with my wonderful “Pops” Shannon (Step-Dad). My Father, Ralf, lives in Tucson, and is originally from Germany. I was born in Nigeria, Africa after my Father was transferred there to run an automotive dealership but came to the States shortly after where we all eventually became American citizens.

Jessica is involved in the horse racing world in race track management, Ryan is employed in the hospitality industry, Jonathan is a software engineer and Dana is working her first year as a 4th grade teacher.

Every summer my husband and I go to the UK for about 5 weeks to visit our many friends and family. We travel the country for about three weeks, ending up in the Salisbury area for the last two weeks in a rental cottage close to where my husband was born and raised. I love the UK and we hope to be able to split our time between there and here in the States once we retire. We both are fanatical football (soccer) fans and support a team from Southampton called the Saints. While we are in the UK, we try to see as many home and away games as possible and while in the States are able to watch them live every weekend on the TV. We sit with our Saints slippers on, our Saints team shirts and drink tea from our Saints mugs during the games. It really is quite ridiculous, I must say! But great fun!

RPF: Can you please tell us about your personal connection to rheumatoid disease and why you chose RPF as one of your charity partners?



Jessica at the Breeder's Cup

About eight years ago I was diagnosed with RA and Sjogren’s. I honestly believe, though, that I have had this for quite some time but hadn’t been diagnosed properly. I have a fantastic rheumatologist who is always there for me whenever I have any issues and has worked diligently in trying to find the right medications and has always gone to battle for me when switching to a new medication and having my insurance initially refusing to cover it. After many years of trying biologics and having a very short shelf life for helping me, I am currently doing 4 Rituxan infusions a year, in addition to weekly injections of Methotrexate. It seems to be helping me quite a bit, so hoping it will continue. Sadly, my daughter has recently been diagnosed with both these diseases as well, so it has really hit home. And, one of our good friends in the UK who has had RA for 30 years has been affected greatly.

I did a tandem skydive last year while we were in the UK and was impressed with the organization’s support of people who were jumping for charities. When my husband suggested that I do an anniversary jump every year when we go back, I thought what a wonderful thing it would be for me to “jump” for a cause. I am very fortunate to have a loving and supportive family, friends and doctor, but know that there are many people suffering from this awful disease who do not have this great support that I have, so I decided without a doubt that I wanted to benefit an RA organization both here in the States as well as in the UK. After research, I found the NRAS in the UK and RPF in the US and knew immediately that these were the organizations I wanted to support. Both organizations are wonderful and are doing such great things to help people with RA as well as working on getting more public awareness about this disease.




RPF: We love unique fundraisers, but we're curious: why sky diving?



Anja's 2016 Sky Dive

Why Skydiving? That’s a good question! And to be honest, many of my family and friends think I’m nuts, but that’s ok! I guess I’ve always been a bit of a daredevil. In the late 80’s, I started racing a Porsche in Vintage Road Racing and then later ran a Formula Ford series with the Sports Car Club of America. I loved it and was actually quite good. My Mother’s Dad and brothers all raced in their younger years as well and I have an Uncle who actually once beat a soon to become famous race driver called Stirling Moss. In the early 80’s I got my pilot’s license and would hear fellow pilots talk about skydivers and ask why on earth would someone want to jump out of a perfectly good airplane?! And I can’t really argue with that. I had always wondered what it would be like but never really thought any more about it and certainly didn’t ever think I would do it. But last year, Alastair and I went to a little airfield in Salisbury, and lo and behold, there was a skydiving company located there! As I watched people participating in jumps and seeing their excitement after doing one, I decided to check it out further. So after finding out more about the company and talking to their employees and getting all the information I could possibly find about skydiving, I signed up for a jump. And that’s how it all began!

RPF: What do you hope to accomplish through your charity sky dive?


Getting ready for the dive!


Doing this skydive will not only be an accomplishment for me personally, but also something that I hope will benefit RPF and NRAS to help further the hard efforts these organizations are doing for a cause that is close to my heart. Personally, to be able to participate in something like a skydive when you have RA is in itself remarkable and am so grateful that I am able to do this. I hope to inspire and encourage those who have RA, both young and old, and to give a positive message to those that are feeling weighed down and depressed with their condition. Believe me, I know what that’s like and it can be very difficult for not only the ones who are physically and emotionally suffering from this, but to those around us as well. Knowing that maybe what I’m doing will give someone who suffers from RA hope and determination to keep on going no matter what is a great reward to me. I feel that as someone who suffers from this disease it is my responsibility to help get the word out about what RA REALLY is and to hopefully have some part in what your organization promotes for awareness, support, advocacy, and ultimately to one day see a cure.



RPF: What are the specifics of your event and where can people go to learn more and donate to your event?


My skydive will be done with a company called GoSkydive on Thursday, August 3, 2017, at Old Sarum Airpark in Salisbury, England. Last year I jumped from 10,000 feet but this year I will be doing it at 15,000 feet. After the first of the year, I will be starting a Facebook page and webpage solely for the purpose of this skydive fundraiser and will have links to a donation site. I want everyone to know that my skydive is completely self-funded and that 100% of all monies donated will go entirely to the non-profits. If anyone wants to get in contact with me prior to kicking off the fundraiser so that I can put them on my contact list, or have questions, etc., etc., that would be great! You can contact me here.

Visit Anja's Fundraiser Website or Facebook page for more details!

Anja will be getting a video and professional photographs during her sky dive and we will share those with you afterwards! In the meantime, check out the video below to see Anja's previous sky dive and the inspiration for her charity dive in August!

Interested in creating your own fundraising event? Contact us with your ideas and we'd love to partner with you in your efforts!

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


2016 – American College of Rheumatology Annual Meeting

November 10, 2016 in Events

Rheumatoid Patient Foundation at the American College of Rheumatology Annual Meeting
Each year, the American College of Rheumatology (ACR) hosts a conference that brings together thousands of rheumatology professionals from around the world to present upon and learn about the most recent research in the field. There are educational sessions, research abstracts and an exhibit hall for related organizations. The Rheumatoid Patient Foundation has participated in several of the prior ACR Annual Meetings by:

This year's event is scheduled for this coming weekend in Washington, D.C. and is expected to bring in over 16,000 rheumatology professionals -- doctors, nurses, researchers and more -- from around the globe.

RPF will have a couple of representatives at this year's Annual Meeting to attend the scientific sessions and connect with healthcare and industry professionals in an effort to further our mission. Stay tuned for blog updates on new research and learnings -- plus, be sure to follow us on Twitter for live tweets during the event!

Rheumatoid Awareness Day 2016: The Real Rheumatoid Disease

January 27, 2016 in Events

February 2nd marks the fourth annual Rheumatoid Awareness Day -- established by RPF in 2013 as a way to spread facts and increase awareness of what rheumatoid disease really is. With so many misconceptions and myths perpetuated by the media, and with a common name of rheumatoid "arthritis," it can be difficult to break through with the truth about RD. For Rheumatoid Awareness Day this year, we have chosen seven facts to help show the world what The Real Rheumatoid Disease looks like -- not the way it's portrayed on TV ads or in the media -- but what it's like for real people. To that end, we are challenging you to help us show #TheRealRD to the world. We've included the facts below along with simple images that can be easily shared on social media. Help us spread the word and use the hashtag #TheRealRD when posting on social media.

The Real RD Blog Challenge!

If you have a blog -- whether it's health related or not -- we are challenging you to take things a step further, to pick one fact and write a blog post about it -- sharing how the fact relates to your own story or a loved one's story of living with Rheumatoid Disease. Use the hashtag #TheRealRD and let's take the blog world by storm! If you don't have a blog, but would like to contribute - send us your story via email and we can post it here on our blog for you. Choose one of the facts below to serve as a writing prompt and we encourage you to use and share the images, as well:

1. Rheumatoid Disease is not a type of arthritis; arthritis is just one symptom.

RD is a systemic disease related to immune function that can affect any part of the body including the heart, lungs, eyes, skin or joints.

Rheumatoid Disease is not a type of arthritis; arthritis is just one symptom.

2. Available treatments are not adequate for many people with moderate to severe Rheumatoid Disease.

About 1/3 of patients don't respond to available biological disease modifying drugs.

Available treatments are not adequate for many people with moderate to severe Rheumatoid Disease

3. Rheumatoid Disease is different in each person -- and even in the same person over time.

Some people experience constant pain; some have a series of "flares" and periods of lower disease activity. Symptoms can vary greatly from day to day.

Rheumatoid Disease is different in each person -- and even in the same person over time.

4. RA Research is severely underfunded in the U.S.

RD is funded at about 1/12th the per-patient rate of similar diseases with comparable impact.

RA Research is severely underfunded in the U.S.

5. Rheumatoid Disease is often an invisible illness.

Just because someone with RD looks good doesn't mean he or she feels good.

Rheumatoid Disease is often an invisible illness.

6. Early, aggressive disease treatment has been shown to provide the best outcomes.

Those whose disease has been treated early have the best chance at achieving remission or low disease activity.

rheumatoid disease - early aggressive treatment produces the best outcomes

7. Remission is rare. Pain is not.

Remission rates have been reported as low as 6% in the average clinical environment. Most people with RD experience pain every day.