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Letter Writing Campaign to Vice President Pence

February 1, 2017 in Advocacy, Important

Mike Pence rheumatoid patient foundation fundraiser

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

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

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

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

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

E-mail Vice President Pence

SAMPLE LETTER TO VICE PRESIDENT PENCE

Dear Vice President Pence,

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

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

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

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

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

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

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

Sincerely,
[Your Name Here]

Rheumatoid Awareness Day 2017: Proclaiming Awareness

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

Rheumatoid Arthritis Awareness Day February 2nd

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

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

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

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

Add Your Voice - Sign the Petition

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

E-mail Vice President Pence

Bring Rheumatoid Disease Out of the Shadows

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

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

add-your-voice

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

by KatieB

Donate Blood to RA Research – Get $50 and a Donation to RPF!

January 30, 2015 in Important

One of the goals of the Rheumatoid Patient Foundation is to contribute to and promote scientific discovery that leads to a cure. Here's one simple way that you can get involved to help accelerate research and perhaps get us one step closer to that ultimate goal of a cure.

Sign up to give a simple, one-time blood donation for RA research, and you can earn $50 for your time plus a $25 donation to a non-profit organization of your choosing (including RPF!).

Rheumatoid Arthritis Research - Donate BloodHere's how it works:

1. Sign-up via this link to volunteer to donate blood for preclinical RA research.

2. Sanguine Biosciences will contact you for additional information. If you meet the current study criteria they will schedule a simple 79mL blood draw. The best part? It can be done from the comfort of your own home at a time that's convenient for you!

3. You will receive $50 for your donation, and you can select a non-profit organization to receive an additional $25 donation.

4. Your blood sample will be sent to a biomedical research group to be used in a preclinical rheumatoid arthritis study.

Sign Up Now!

In the current study, researchers will be studying blood samples divided into three cohorts based on responsiveness to specific treatment types (Non-responsive to methotrexate; Non-responsive to anti-TNF treatment; and Responsive to anti-TNF treatment). If you don't qualify for the current study, Sanguine Biosciences will keep your information on file and contact you when they have a study that's a match for you. Please note, you must be 18 years or older to donate, and you must live within the specified geographies on the sign-up page.

Visit the Sanguine Biosciences website to learn more about the company and the donation process.

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!

Give Now to Double Your Donation, Double Your Impact

January 21, 2014 in Important

Matching Donation Challenge - Double Your Donation to the Rheumatoid Patient FoundationIn honor of Rheumatoid Awareness Day, Crescendo Bioscience is offering a matching grant to the Rheumatoid Patient Foundation. Now through February 8, 2014, all donations made to RPF will be doubled by Crescendo Bioscience – up to $15,000!  Thanks to this generous matching grant, you have the opportunity to double your dollars and double your impact for RPF. Your donations are what make the RPF possible, and together we can make a difference in the lives of those with Rheumatoid Disease.

As a supporter of RPF, you can also help to spread the word and help us take advantage of this great opportunity!

Consider a gift as simple as $7 -- which will be doubled to $14 -- in celebration of the 2014 Rheumatoid Awareness Day. Click here for more ways you can get involved in Rheumatoid Awareness Day.

Or maybe one dollar for every year that you or your loved one has lived with rheumatoid disease.

Give Now

If you would rather donate by sending a paper check, send the check to the address below.

Rheumatoid Patient Foundation
PO Box 236251
Cocoa, FL 32923

All donations are tax-deductible in the United States. Feel free to visit our Financial page.

ABOUT CRESCENDO BIOSCIENCE®, INC.

Crescendo Bioscience is a molecular diagnostics company focused in rheumatology and located in South San Francisco, CA. Crescendo Bioscience develops quantitative, objective, blood tests to provide rheumatologists with deeper clinical insights to help enable more effective management of patients with autoimmune and inflammatory diseases. For more information, please visit the company’s website at http://www.CrescendoBio.com.

by KatieB

Unmasking Rheumatoid Disease

April 23, 2013 in Exciting, Important, Patient Input

Unmasking Rheumatoid Disease: The Patient Experience of Rheumatoid ArthritisOne goal of RPF is to create greater understanding of the nature of rheumatoid disease. Describing actual patient experiences is one significant method of contributing to this goal. In 2011, RPF offered an online survey to rheumatoid patients which asked questions about the patients' experiences with rheumatoid arthritis symptoms, treatment and care.  An overview of the results from this survey were published in a poster format, which was used as a handout at the 2012 American College of Rheumatology Annual Meeting.  RPF has now expanded its reporting of these findings in the form of a published white paper.  Click here to download the entire document -- Unmasking Rheumatoid Disease: The Patient Experience of Rheumatoid Arthritis.

The survey results revealed a wide array of patient experiences, many of which fall outside of the typical model of RA that is presented in current medical literature.  For example, although exercise is often touted as being beneficial for RA by improving mobility and lessening symptoms, two thirds of the participants reported that exercise caused an increase in RA-related pain.

unmasking rheumatoid disease - survey response

The survey data also challenge the concept of “morning stiffness” that tends to go away after a patient gets out of bed and begins his or her day, as well as the perception that joint damage and swelling are directly related.

The patient responses recorded from this survey indicate that the majority of patients continue to live with pain and symptoms from RA, despite receiving disease treatment.

Reporting these results is critical to creating a greater understanding of the nature of rheumatoid disease and how it affects individual patients -- which, in turn, can help identify gaps in education and communication and ultimately improve care.

Thank you to all who took the time to complete our original survey.  Your responses made it possible to publish this report and make your experiences known.

Click here to download the complete white paper.

by KatieB

Give Now & Double Your Dollars

January 28, 2013 in Important

Matching Donation ChallengeNow through February 5, 2013, all donations made to the RPF will be doubled by Crescendo Bioscience – up to $10,000!  We encourage you to take advantage of this matching donation to help support the RPF’s work and mission of improving the lives of people with rheumatoid disease.  Your donations are what make the RPF possible.

Consider a gift as simple as $6 – as we celebrate the inaugural Rheumatoid Awareness Day, $6 reflects the 6-week time period that the groundhog’s shadow predicts and the short window of opportunity for early diagnosis and treatment.

Give Now

If you would rather donate by sending a paper check, send the check to the address below.

Rheumatoid Patient Foundation
PO Box 236251
Cocoa, FL 32923

All donations are tax-deductible in the United States. Feel free to visit our Financial page.

ABOUT CRESCENDO BIOSCIENCE®, INC.

Crescendo Bioscience is a molecular diagnostics company focused in rheumatology and located in South San Francisco, CA. Crescendo Bioscience develops quantitative, objective, blood tests to provide rheumatologists with deeper clinical insights to help enable more effective management of patients with autoimmune and inflammatory diseases. For more information, please visit the company’s website at http://www.CrescendoBio.com.

by KatieB

February 2: A Day of Astronomical Significance

January 22, 2013 in Events, Exciting, Important

By Dana Symons

The Rheumatoid Patient Foundation has just announced the establishment of the first ever awareness day for rheumatoid arthritis (click here to read the press release), to help bring education and awareness of this often misunderstood disease to the public.   Rheumatoid Awareness Day will be held each year on February 2nd.  Yes, that’s also Groundhog Day.  So, why did we choose this day?  Well, there are a few reasons…

Heart Health

 

It’s a Matter of the Heart

The month of February is designated as Heart Disease Awareness month, which touches on one of the most serious aspects of rheumatoid disease: its effect on the cardiovascular system. We want to inform the world that this is not merely a joint disease and move away from the characterizations about it being focused on the hands. We also believe focusing on the heart and other organs will improve advocacy and research efforts.

 

GroundhogThe Groundhog & His Shadow

Every year on February 2, the groundhog comes out of his hole to see if he can see his shadow.  It’s the moment of truth: if he sees his shadow, then tradition says that there will be six more weeks of winter.  But if he does not see his shadow, then spring is right around the corner.   This moment of coming out of the hole can be compared to rheumatoid disease onset – there’s no real way to predict which path the disease will take, how long it will be until it’s diagnosed, or what treatments will work.  You might as well ask the groundhog!  The six weeks of time that the groundhog is predicting corresponds to the short window of opportunity for patients with rheumatoid disease to get early diagnosis and treatment.  There’s also a sense of bringing rheumatoid disease out of the “hole” or out of the “shadows” as we bring the truth of the disease into the light for the public to see.

 

Groundhog Day Movie
Let’s Not Forget the Movie

Of course, we can’t talk about Groundhog Day without mentioning the movie.  The first time Bill Murray (Phil) wakes up to a repeating day is like the first time someone wakes up with symptoms of rheumatoid disease.  It’s that moment where you go “What is THIS? WHAT is going ON?” Living the same repeated day over and over again is not an unusual feeling for somebody with rheumatoid disease who wakes up each day to the same chronic symptoms.

 

 

Cross Quarter DayA Day of Astronomical Significance

Quite literally.  February 2nd is what is known in astronomy as a cross quarter day – meaning that it is midway between a solstice and an equinox – in this case, midway between winter and spring.  Winter may still be here, but the hope of spring is approaching.  We are not out of the cold yet, but the RPF seeks to bring awareness to rheumatoid disease, to bring us into sunnier days, blossoming through education and understanding.

Get Involved

As Rheumatoid Awareness Day approaches, help spread us spread the word!  Click here for a list of ways that you can get involved and help the RPF raise awareness for Rheumatoid Disease.

by KatieB

ACR RA VIDEO PROJECT

October 3, 2011 in Important

The first week in November, the Rheumatoid Patient Foundation (RPF) will exhibit at the annual Scientific Meeting of the American College of Rheumatology. The meeting is one of the largest of its kind with about fifteen thousand medical professionals attending from around the world. There are also thousands of pharmaceutical industry, biotechnology, marketing, and research personnel.

This exhibit is a unique opportunity for our organization! We will have an opportunity to demonstrate The Face of Rheumatoid Disease to those who diagnose the disease, to those who create the treatments, and to others who market products to us. We have several effective ways we plan to present the patient viewpoint.

However, the most thrilling is an RA VIDEO PROJECT.

We believe that this project will help those who have not experienced RA to better appreciate what RA patients experience in living with the disease. We can convey a more complete picture of the disease and of the brave struggle many people have to continue to pursue their lives while fighting RA. Patients’ lives are much more than can be seen in a clinical setting – and we will show that.

You can participate in the RA VIDEO PROJECT.

If you would like to help us to produce the video project for the ACR meeting, you can do two things.

(1) You can make a tax deductable donation to help cover costs.

(2) You can request an instructional email which will provide specific details about video clips that you can submit for possible inclusion in the RA VIDEO PROJECT. Please read that email before sending any clips.

 

Please consider donating to help cover the costs of creating materials for the ACR meeting – click here to donate now.

by KatieB

Rheumatoid Patient Foundation RA Survey

October 3, 2011 in Important

The RA Survey is an opportunity for patient voices to be heard.

Our first survey asks basic questions about living with RA that many patients have never been asked. Our goal is to learn more about RA patients so that we can better represent their needs.

The survey answers are anonymous. However, no one can replace your response. The more people who respond, the clearer the portrayal of RA will be.

RPF is using a secure survey service called Wufoo to manage the RA Survey. Watch for updates with some electronically generated reports produced with their program.

If you are living with Rheumatoid Disease, you can fill out your RPF RA Survey – just click here. It usually takes about 10 minutes, but you can take longer if you like.