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RD Profile: David St. Martin

February 20, 2018 in Advocacy, Interviews, Patient Input

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 contact us.

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

 

by KatieB

15 Ways to Spread Rheumatoid Awareness in 2015

January 22, 2015 in Advocacy, Events, Important

by Dana Symons

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

by KatieB

15 Seconds of Fame: Rheumatoid Awareness Video Challenge

January 20, 2015 in Advocacy, Events

by Dana Symons

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

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

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

by KatieB

I Support RPF Because Patients Are the Best Advocates for Patients

January 28, 2014 in Advocacy

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

By Elizabeth Riggs, PhD

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

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

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

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

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

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

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

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

Cheerio!
Elizabeth Riggs

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