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RPF Scholarship Award Recipients

June 2, 2016 in Exciting, RPF News

The Rheumatoid Patient Foundation has completed its second year offering the RPF Scholarship Program. This program offers students who have rheumatoid disease or who have a parent with rheumatoid disease the opportunity to get some financial assistance as they pursue higher education. This year's program offered up two $1,000 scholarship awards. We had an overwhelming response with more than double the number of applicants this year as last -- which underscores the need for this sort of program. The scholarship program required applicants to submit a written response to several essay prompts. We had many excellent submissions and would like to say thank you to all who took the time to apply for this scholarship program. We wish you all the very best in your higher education and vocational pursuits.

Our judging panel has selected this year's winners and we are pleased to announce and introduce to you this year's RPF Scholarship Award Recipients:

Kristine Malixi

Kristine was diagnosed with rheumatoid arthritis in 2008. Since then, she has earned a Master’s degree in occupational therapy and is now pursuing a PhD with a focus on the quality of life of young adults diagnosed with rheumatoid disease.

"I am so humbled by the work of organizations like Rheumatoid Patient Foundation that are so dedicated to advocating for people like me. Together, we can take down the barriers of disease to build the brightest of futures for our community!"

 

 

 

 

 

 

Ariella Phillipo

rheumatoid patient foundation scholarship winner

Ariella Phillipo grew up in Upstate New York. She was diagnosed with Polyarticular Juvenile Rheumatoid Arthritis (JRA) at seventeen months of age, and later developed Anterior Uveitis at the age of two. She has battled with her rheumatoid arthritis her entire life, but refuses to let it hold her back from a successful education and career.

She is currently studying advertising and public relations with a 4.0 GPA at Columbia College Chicago in Chicago, IL. She hopes to peruse a career in pharmaceutical advertising and strives to create transparent messages that inform and engage audiences within the medical community.

 

 

 

Congratulations to you both!  For more information on the RPF Scholarship Program and for information any any future award opportunities, please click here.

Click here to view our 2015 Scholarship Winners.

RPF Scholarship Winners

May 22, 2015 in Exciting, RPF News

RPF is excited to announce the two winners of our very first scholarship program: Amanda Jones of Montgomery, Alabama and Melissa Eller of Hickory, North Carolina. Congratulations! We had many excellent entries and we want to thank everyone who took the time to submit an application and essay. We wish you all the best in your educational and vocational pursuits. If you are a higher education student (or will be next year), we encourage you to keep an eye out for this year's Scholarship Program to be announced later in 2015.

Here's are a few highlights about our winners.

Amanda (Mandy) Jones

Rheumatoid Patient Foundation scholarship winner Amanda Jones

Mandy was diagnosed with Rheumatoid Disease in 2012. She is currently a senior in high school and is in the process of selecting the university that she will be attending in the fall.

"I am pursuing my dreams to become a biomedical engineer. I have been accepted to Saint Louis University, University of Alabama-Birmingham, and The University of Tennessee, with scholarship to all three. Take that, RA!"

Melissa Eller

Rheumatoid Patient Foundation Scholarship winner

Melissa was diagnosed with Rheumatoid Disease when she was in her thirties and has been living with RD for over six years. She currently works as an Activities Coordinator at an assisted living facility and is pursuing continuing education at her local community college.

"I wanted to express my gratitude to you all for this opportunity. I had given up hope on ever being able to become an event planner but now thanks to this scholarship I can say that my dream job is with in reach now!"

Congratulations once again to our winners! RPF recognizes the financial and career challenges often posed by Rheumatoid Disease. We are happy to be able to offer this scholarship opportunity to help support students affected by RD. Details about the next scholarship opportunity will be posted at the following link, when available: http://rheum4us.org/rheumatoid-arthritis-resources/rpf-scholarship-program/

by KatieB

New Scholarship Program for Families Affected by Rheumatoid Disease

October 20, 2014 in Exciting, RPF News

graduation for sidebarRPF is excited to announce a new scholarship program for individuals and families who are affected by Rheumatoid Disease. In our first year, we will be offering two $1,000 scholarships toward higher education expenses, to be awarded to individuals living with RD or who have a parent with RD.  We recognize the financial strain that rheumatoid arthritis can place on a family and the career challenges many people with rheumatoid disease face.  In light of that, we are happy to be able to offer some support to those looking to advance their education and/or change careers.

Scholarship applicants will be required to submit a short essay answering questions about their experience with rheumatoid disease and how it has affected their lives. All essay submissions will be judged based on content and quality, and two winners will be selected.  The scholarship deadline for this year is December 31st, 2014.  Winners will be selected and scholarships will be awarded in 2015.

Click here for more information on the 2014 Scholarship Program or to submit your application.

by KatieB

ContextMedia, Inc and RPF Bring Patient Voice to Rheumatology Offices

August 22, 2014 in Exciting, RPF News

Patient Videos in Rheumatology Offices

Rheumatoid Patient Foundation Video - The Faces of Rheumatoid DiseaseRheumatoid Patient Foundation is excited to announce a collaboration with ContextMedia, Inc. The ContextMedia:Health Network offers a patient education TV network to doctors' offices across the country, including about 600 rheumatology offices. RPF's very own Faces of Rheumatoid Disease video will be running across the ContextMedia:Health rheumatology network. Additionally, RPF has collaborated with ContextMedia, Inc. to produce a series of videos focused on the individual stories of people with Rheumatoid Disease. The first of these videos will run this month.

Rheumatoid Patient Foundation Resources Available to Patients and Doctors

RPF will also provide educational materials to rheumatology offices in the ContextMedia:Health Network. We will be distributing several of our brochures to participating offices. Individuals and health professionals can also request copies of our educational materials directly from our website.

Patients Supporting Patients in Their Doctors' Offices

Our hope is to provide educational resources that are easy to understand and to provide encouragement and support to others with rheumatoid disease during their time spent in doctors' waiting rooms. Rheumatoid disease can be confusing and isolating; and sometimes just hearing from another voice who understands can provide hope.

Share Your Story

Want to share your story? We'd love to feature you on our blog! Click here to email us and we'll provide some parameters to help put your story together and share your experience with Rheumatoid Disease.

Share Your Story

by KatieB

Patient-Driven Research, Biomarkers, and More from the ACR Meeting

January 27, 2014 in RPF News

RPF member Andrew Lumpe describes a few highlights from the recent American College of Rheumatology (ACR) annual meeting in San Diego. Andrew is a professor at Seattle Pacific University and a talented statistician who coauthored one of RPF’s recent abstracts published at ACR.

By Andrew Lumpe

Patient-driven research on the impact of physical activity

Dana-Kelly-Andrew-postersI was privileged to spend three wonderful days at the ACR scientific meeting in San Diego. The highlight was a research paper (poster) that a team from RPF presented. The goal of this study was to obtain greater understanding of the nature of RA as experienced by patients. This study involved a patient survey that contained some questions related to consequences of performing certain physical tasks and whether a recovery period followed.

The results of this study suggest an aspect of disease impact on physical functional that is not detected by a common assessment tool used by doctors and researchers, the “HAQ.” Several results of this survey indicate the existence of a “recovery period” after physical activity in people living with rheumatoid disease (RD). The survey data also indicate that patients modify activity to manage consequences of RD. Further investigation is needed to develop ways for patient outcome measures to more accurately assess rheumatoid disease activity.

It was exciting to participate in patient-driven research about RD and the goal is that such efforts will continue to inform clinicians and researchers so that diagnosis and treatment will improve.

More observations from the ACR meeting

In addition to the research paper presentation, I spent time volunteering at the RPF exhibit where I was able to meet other wonderful volunteers and speak to doctors and researchers about the patient perspective and the goals of the RPF. In between shifts working at the exhibit, I attended several excellent sessions and browsed the poster presentations. Below are several keys ideas I gleaned from the conference.

  • The information age stands to completely transform medicine and drug development.
  • There is a “patent cliff” coming soon where many current pharmaceutical companies will loose patents on drugs. The question remains about who will develop new drugs after this happens.
  • Huge online databases may be able to help identify genes connected to diseases (diagnostics) and be used to develop new drugs (therapeutics).
  • Patient self-assessments of RA symptoms align with rheumatologist assessments about 50-70% of the time. Questions remain about where they disagree.
  • There are several new RA drugs in phase III clinical trials that may make it to market soon.
  • The exhibit hall was overwhelming and pharmaceutical companies who sell popular biological medicines spend vast amounts of money on marketing at ACR.
  • Personalized medicine based on genomics and autoantibody profiles may be in the future.
  • Biomarkers for various signaling pathways may be used in future drug development.
  • Autoimmune antibody markers other than Rheumatoid factor (RF) and anti-CCP are being investigated in order to better predict Rheumatoid Arthritis diagnosis.
  • People with positive RF and Anti-CCP tests tend to have higher levels of inflammatory cytokines.
  • The lung is being investigated as a possible site of RA initiation.
  • Systemic inflammation of RA may contribute to depression.

It’s exciting that through the RPF, people actually living with the disease have the opportunity engage with health care professionals at their scientific meeting. Such interaction is critical for advancing research and ensuring the best quality care and treatments.

Read more from Andrew on his blog – click here.

Rheumatoid Awareness Day is just a week away – February 2.

This year patients and organizations across the U.S. and in other countries are observing the second ever awareness day for RD. For updates on RPF sponsored Awareness Day events – click here.

Click here to learn more about Rheumatoid Awareness Day, February 2.

 

by KatieB

SURVEY DATA CHALLENGE CONVENTIONAL THINKING OF RHEUMATOID ARTHRITIS AND REVEAL UNRECOGNIZED ASPECTS OF THE DISEASE

October 22, 2013 in Events, Press Release, RPF News

Rheumatoid Patient Foundation to Present Findings at the American College of Rheumatology 2013 Annual Meeting

October 22, 2013 -- The Rheumatoid Patient Foundation (RPF) announced today that it will be presenting two abstracts with compelling findings on the nature and assessment of rheumatoid disease at the 2013 American College of Rheumatology (ACR) / Association of Rheumatology Health Professionals (ARHP) Annual Scientific Meeting, to be held October 25-30 in San Diego, CA. The data, which was collected through large surveys of patients with rheumatoid disease, will be presented by RPF founder and president, Kelly Young, and abstract co-authors in two poster sessions.

Findings to be presented include data on disparities that exist between current medical literature and actual experiences of those living with rheumatoid disease – including the concept of “morning stiffness,” the relationship between swelling and joint damage, and factors that increase or decrease symptoms. Young notes, “An accurate view of patient experiences with the disease is critically important to improving clinical care and discovering better treatments. Our data show a variety of experiences with the disease, which emphasize the importance of clinicians engaging patients to learn about their condition.”

Additional data will be presented examining how the Health Assessment Questionnaire (HAQ) gauges fundamental aspects of rheumatoid disease, including the consequences of physical activity as seen in a real-world context. Young explains, “The HAQ is considered the gold standard in RA assessment, but the data show it may not measure essential aspects of disease impact.”

Details about each of the poster sessions can be found below.

Poster Title: Patient Survey Challenges Conventional Notions Regarding Symptoms and Experiences Of People Living With Rheumatoid Arthritis
Abstract: #2273
Presenter: Young, Kelly O'Neill BA
Co-Authors: Crowson, Cynthia S. MS; Symons, Dana M. BBA
Date: Tuesday, October 29, 2013
Presenter Available: 9:00 am - 11:00 am
Poster Available: 8:30 am - 4:00 pm
Location: Exhibit Hall B2-C-D

 

Poster Title: Patient Survey Regarding Utility Of The Health Assessment Questionnaire Reveals An Unrecognized Aspect Of Disease Activity In Rheumatoid Arthritis: Consequences Of Physical Activity
Abstract: #2272
Presenter: Young, Kelly O'Neill BA
Co-Authors: Symons, Dana M. BBA; Lumpe, Andrew T. PhD; Crowson, Cynthia S. MS
Date: Tuesday, October 29, 2013
Presenter Available: 9:00 am - 11:00 am
Poster Available: 8:30 am - 4:00 pm
Location: Exhibit Hall B2-C-D

 

About the Rheumatoid Patient Foundation
RPF is a 501c(3) non-profit organization dedicated to improving the lives of people with rheumatoid diseases such as rheumatoid arthritis and juvenile arthritis. RPF was founded in 2011 to address a significant lack of disease education, comparatively low levels of research funding, and difficulty obtaining adequate treatment. RPF is committed to creating pathways to better clinical care and disease outcomes through education, awareness, and participation in patient-centered research. For more information, visit http://rheum4us.org or follow RPF on Facebook or Twitter.

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.

by KatieB

Amazing Advocates: Inspiring Stories from Patient Advocates

July 12, 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. We want to share 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 and to see some example letters.

By Janette Sands

janette-sands2I wrote to my congressman this morning – in an effort to support our cause I think it is a good first step.  Click here to view a copy of the letter that I sent.

Congressmen need to hear our stories; maybe they can in the future, sponsor legislation for us. My dream and a sure great way to start off the campaign would be for one of them to sponsor Rheumatoid Awareness Day as a federally recognized day.

If each warrior is able to write a personal note to their Congressman and start the conversation/education/relationship it would open their eyes -- or at least when we start visiting them they will be on task with us.

All congressmen have a local office, anyone from their constituency can make appointments with their staff to talk or just drop off the press release. From my experience, writing a personal letter normally helps getting personal attention.

The two links below will allow each warrior to do it individually.

 NOTE: If you have written a letter or conducted other advocacy efforts, RPF members would like to hear about it. Please email Advocacy@rheum4us.org to share your story.

Amazing Advocates: Changing the World

July 5, 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. We want to share 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 here to see example letters.

Rheumatoid Awareness Day Proclamation - Wausau, WIBy Shannon Young

My favorite quote is by Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Therefore, I live my life being involved in things in my community that I hope are making a difference – alcohol and drug abuse prevention, neighborhood work and kid-serving organizations.

Being diagnosed with rheumatoid disease (RD) was a complete surprise to me, as the onset came quickly after a surgery and was fast and furious. I found that some of the things I loved being involved in I had to give up, but the connections made through that involvement set the stage for me to be able to promote awareness of rheumatoid disease.

I was thrilled when I saw the press release about Rheumatoid Awareness Day! I knew this was an opportunity to start a conversation about this disease in Central Wisconsin. Because it is one designated day, I decided that a proclamation by the Mayor of Wausau was the best way to start. I looked online for other proclamations to see how they were worded. I then went to the RPF website and RAWarrior website to pull out the most important pieces of information on rheumatoid disease and put those golden nuggets in the proclamation format.

With the “work” already done, I contacted the Mayor’s secretary via email and asked her what is necessary for the Mayor to sign a proclamation. I already had an established relationship with both her and the Mayor from prior neighborhood work, but you can make this type of contact without a prior relationship, as well. She explained to me that proclamations are signed in by the Mayor at a city council meeting – even better than I had hoped! She put it on the next council agenda, February 12, 2013 and said I should plan on being there for him to read it and sign it! She was grateful for the fact that all she had to do was print the proclamation on the paper they use for them. Notice the date was after February 2nd? I didn’t let that discourage me – this is about awareness and though the timing wasn’t perfect, it was a huge step forward.

David Biundo and I were able to attend the meeting and were called forward when the Mayor read the proclamation. There were some pretty surprised faces in the crowd when they heard some of the information about RD. We received a beautiful copy of the proclamation and from 2013 on, in the City of Wausau, WI, February 2nd is declared as Rheumatoid Awareness Day!

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Here is the actual text of the proclamation:

Whereas Rheumatoid Disease (also known as rheumatoid Arthritis) affects 1% of the population; and

Whereas RD is a progressive, destructive disease frequently leading to disability; and

Whereas RD is a disease in which immune cells attack joints and organs, including heart and lungs; and

Whereas almost 2/3 of patients have a 20% response or less to treatments; and

Whereas no cure is known; and

Whereas the United States spends a fraction on RD research of what is spent on rarer diseases with similar mortality rates; and

Whereas early diagnosis is critical in preventing irreparable damage to joints and other tissue; and

Whereas the Rheumatoid Patient Foundation has formed to create awareness, generate support, provide advocacy and push for research to find a cure; and

Whereas the Rheumatoid Patient Foundation has declared February 2 as Rheumatoid Awareness Day – a day to bring Rheumatoid Disease out of the shadows;

Now, Therefore, I, James Tipple, Mayor of the City of Wausau, do hereby proclaim February 2, 2013 and every February 2 thereafter,

Rheumatoid Awareness Day

Throughout the city of Wausau, and I commend this observance to all of our citizens.

by KatieB

Rheumatoid Awareness Jewelry

July 2, 2013 in RPF News

By Katie Beth Young

Just before the first Rheumatoid Awareness Day, the Rheumatoid Patient Foundation (RPF) released the Rheumatoid Disease awareness ribbon. We had a great response. Many of you have used the ribbon in many ways including on social media via Twibbon or at local awareness events.

Rheumatoid Awareness Bracelet

Here's a lovely RD awareness ribbon that you can wear!

     

RPF member Paige Wright has created bracelets, earrings, and keychains out of the Rheumatoid awareness ribbon in her handmade jewelry store called Wright at Home Crafts. She has decided to donate 5% of the proceeds of all of her sales to the RPF. Thank you so much Paige!

You can get your Rheumatoid Disease awareness jewelry here and Paige's other handmade disease awareness items.

Be sure to check out the partners page for our corporate members and partners. If you or anyone you know is interested in being  a corporate member or business partner like Paige, send me an email at katieb@rheum4us.org