You are browsing the archive for Rheumatoid Awareness Day.

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.

2017 Rheumatoid Awareness Day Twitter Chat

January 18, 2017 in Events

rad-twitter

 

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: http://www.tweetchat.com/room/rheum  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.

Rheumatoid Awareness Day Twitter Chat

February 1, 2014 in Events

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

Here are some topics we will discuss:

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

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

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

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

by KatieB

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.

Amazing Advocates: Rheumatoid Awareness Day Proclamations

July 19, 2013 in Advocacy, RPF News

Several people in our community have shared stories with RPF recently about their own advocacy efforts and contact they've had with government officials in light of the newly established Rheumatoid Awareness Day. Today we share two of their inspiring stories as encouragement to others who want to join in advancing the cause of rheumatoid patients through advocacy activities. Click here for some basic tips about patient advocacy or click here to see example advocacy letters.

By Jeanie Ready

Proclamation of Rheumatoid Awareness Day in Plano, TX

Official Proclamation of Rheumatoid Awareness Day for the City of Plano, Texas

To help support Rheumatoid Awareness Day, I have started a campaign to have the local city councils in my area officially acknowledge February 2nd as Rheumatoid Awareness Day. It is my hope to present these requests in person at various council meetings in my area, providing another opportunity to educate, inform, and recruit supporters. Although it is past time to attempt to get proclamations prior to the inaugural day this year, councils will still consider such action for the future. The sooner we get them involved, the better. Here's what I did to communicate my request to five local city councils today:

1. Located local city government web pages to obtain the names & email addresses for the Mayor, Mayor(s) Pro Tem, Councilmembers, City Manager and any Deputy City Managers

2. Created an email template that included a brief personal history, a request to add an action item proclaiming the official day and to present the item in person at the next available meeting, and links to the official press release, as well as the RPF website.

Depending on each city government structure, I focused on communicating mainly with the Mayor, Mayor(s) Pro Tem, City Manager and Deputy City Manager(s). Further, in my city of residence, I also included the councilmember from my district in that list. In smaller cities, I may include all councilmembers, depending on their particular governmental structure. Again, the city's official website should provide all the information needed to communicate effectively, as well as their structure. If I do not receive responses within one week, I will follow up via phone calls to the City Managers and/or Mayors of each city. However, most cities should issue some sort of response within that timeframe.

Click here to view the general template that I used in this effort. If anyone is interested in pursuing this in their local cities and towns, please feel free to use all or part of my template. Of course, please insert your own brief personal history. Also, if you're not comfortable presenting your requests in person at the council meetings, you can still request a proclamation without having to speak in person.

Proclamations of Rheumatoid Awareness Day were issued in the cities of Allen, Frisco and Plano, Texas.  I've also discovered that the public information departments should be contacted to get Rheumatoid Awareness Day & any future related events posted on city calendars & websites.

 

By an anonymous volunteer

Recently a rheumatoid patient in Canada took a bold step to contact the Prime Minister's office regarding the establishment of Rheumatoid Awareness Day.  She asked that the day be officially recognized in Canada and sent some brief information and a copy of the press release.  A response was quickly received from the Prime Minister's office, redirecting the inquiry to the Minister of Health.  The end result was that she received the proper information to submit a request and establish an official proclamation for next year's Rheumatoid Awareness Day in British Columbia, Canada.