AForum header

 

AForum 
News for Advocates of the Arthritis Foundation, Great West Region
Spring 2014

Subscribe to receive future publications

 

Articles This Issue

Advocates in Action
Local advocates traveled to Washington, D.C. to meet with legislators and share how arthritis impacts their lives. See photos. 

Why I Advocate
Reina Magrum helps to lead the charge for arthritis advocates. Read her story.

Summit Profile
Learn about the Advocacy Summit first-hand from an advocate at the event.  

Advocacy Summit, By the Numbers
Find out more about the remarkable influence of arthritis advocates at this year’s Advocacy Summit.  

Policy Volunteers Needed
Unique new opportunity for advocates with a passion for accessible and affordable care. Get involved.

#SkillBuilder
Amplify your advocacy with a simple hashtag. Get started.

On a Mission for the Cure!
Learn how to double, or triple, your impact as an advocate.

Sign-up as an E-advocate

Get Connected

 

 


  

Advocates in Action

  

Thirty two advocates from the Arthritis Foundation, Great West Region traveled to Washington D.C. from March 24-26, 2014 for the Arthritis Foundation’s 16th Annual Advocacy Summit.

These advocates met with countless legislators and shared how arthritis impacts their lives and how our elected officials can enact change and improvements for those with arthritis.

summit montage

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


 

Why I Advocate

Reina Magrum helps to lead the charge for arthritis advocates.

 

MagrumReina Magrum
Stockton, CA

In her own words…
I became involved with the Arthritis Foundation last year because my ten year-old daughter, Hannah (pictured left with Reina), has juvenile arthritis (JA). She was diagnosed at 18 months old.

Volunteering has been a way for our family to get involved and take action. After contacting the Arthritis Foundation, San Francisco office, I received support, resources and assistance beyond my expectations. An Arthritis Foundation staff person even met me for coffee to discuss ways to get involved.

Last year, an Arthritis Foundation staff member who was familiar with my volunteer experience approached me about becoming an Arthritis Ambassador. I was reluctant to sign-up, but the staff member explained how easy it was to get involved and how important this role would be not only in my daughter’s life, but in the lives of others across the United States.quote

The experience of being an Ambassador has been new and exciting for both Hannah and me. We met our Congressman to ask him to support a bill. As an Ambassador I also staffed the advocacy booth at a juvenile arthritis event to encourage other parents to get involved and make a meaningful contribution.

Being an advocate has allowed me to use my voice at many Arthritis Foundation functions. Participants at these functions already care about the cause, so informing them of how easy it is to make a difference as an advocate is a great way to reach out.

When the Arthritis Foundation calls to ask me to attend an event, I am more than happy to step up and help with advocacy recruiting efforts. It’s important for me to promote awareness of the frightening fact that there are too many states without a single pediatric Magrum familyrheumatologist and how detrimental this is to children with JA and other rheumatic diseases.

A good advocate is someone who has been affected by arthritis in any way at all; or someone that cares for someone who has arthritis. Anyone can be a good advocate, but when your heart is in it, you will be a great advocate.

If you are hesitant to become an advocate, you should know that it is not as scary, as complicated, or as time consuming as you may initially think. Arthritis Foundation staff members will take the time to talk with you and explain how you can help. It doesn’t take much time to send an email or meet with your local member of Congress, staff a booth at an Arthritis Foundation event you are already planning on attending, or even to make a call to an elected official while reading a pre-written advocacy script. The Ambassador program makes it pretty effortless. Once you become involved, the only question you will ask is why you didn’t start doing it earlier!

 

 

 


 

Summit Profile

Learn about the Advocacy Summit first-hand from an advocate at the event. 

 

blogMariah Zebrowski Leach was diagnosed at age 25 in 2008 with rheumatoid arthritis (RA). She chronicles her journey with RA in her blog, From This Point. Forward. 

Mariah was a Regional Advocacy Summit Scholarship awardee.  Her most recent posts reflect on her endeavors at the Advocacy Summit in Washington, D.C. Join Mariah as she shares information from the experts, the latest data, and ways you can join her in making a difference!


BLOG entry – Mariah’s perspective on the Advocacy Summit 

BLOG entry - Making Biologic Medications Accessible and Affordable 

BLOG entry – Research Update from the National Institutes of Health 

 

 

 

 


 

Advocacy Summit, By the Numbers

The remarkable influence of arthritis advocates at this year’s Advocacy Summit.

  

summitHow impactful was this year’s Advocacy Summit? This impactful.  See the effectiveness of our advocates, by the numbers.

  • Over 300 attendees, from 46 states, attended 240 Congressional meetings advocating for these three issues
  • 150 House of Representatives Meetings
  • 92 U.S. Senate Meetings
  • 71 Member level meetings
  • Over 2,500 emails sent to Capitol Hill during the Virtual Summit.
  • 11 new Co-sponsors for H.R. 460
  • Congressman David B. McKinley attended the opening ceremony to receive the 2014 Advocacy Congressional Leadership Award.
  • Over 150 advocates heard Dr. John O’Shea, Scientific Director, NIAMS, NIH speak about the latest arthritis research.  The session was moderated by Patience White, MD, MA and Arthritis Ambassador Keith Moschitta, Tennessee.
  • Nearly 40 kids with arthritis and their siblings attended the Kids Summit.

 

 

 


 

Policy Volunteers Needed!

Unique new opportunity for advocates with a passion for accessible and affordable care. 

 

The Great West Region is expanding volunteer opportunities in advocacy. In addition to our committed corps of Ambassadors, we are also actively recruiting volunteers who are interested in working on state advocacy issues related to accessible and affordable care. If you are passionate about our federal priority issues and would like to do more locally, please contact Johanna Lindsay, VP, Programs, at jlindsay@arthritis.org

 

 

 


 

#SkillBuilder

Amplify your advocacy with a simple hashtag.

 

skill builderAdvocacy is more than just politics. As volunteer Mary Colburn from Utah says, “Advocacy is about standing up for something that you believe in.” This includes talking with friends, family and neighbors – and easier still, using your social media connections to raise awareness.

This spring, we invite you to add #FaceArthritis to your posts and tweets. Not familiar with the “#”? The “hashtag” is a way of joining in on a global conversation – in this case, a conversation that raises awareness about living with arthritis.

Give it a try with these sample posts:

  • Join me in the fight! We can’t find a cure without you. Sign-up to #WalkToCureArthritis! #FaceArthritis http://bit.ly/WTCA2014
  • I am an arthritis advocate because we need a cure! Join me! #FaceArthritis http://bit.ly/1kadmnM
  • Our family knows too well that #KidsGetArthritisToo. #FaceArthritis http://bit.ly/1iyXRl4

 

 

 


 

On a Mission for the Cure!

Learn how to double, or triple, your impact as an advocate.

 

lettersMore than 30 delegates from the Arthritis Foundation, Great West Region volunteered their time to speak to Congress face-to-face at this year’s Advocacy Summit. If you weren’t able to join us in Washington D.C. there are still many ways you can make a difference by showing Congress how arthritis affects individuals, families and the community. Below are just three examples. 

 

Volunteer at a Walk to Cure Arthritis

Through eight Walk to Cure Arthritis events across the Region, thousands will come together to raise awareness and funds to cure arthritis - the nation’s leading cause of disability. Volunteers at the Walks collect stories from individuals living with arthritis and encourage them to send letters to elected officials. These letters seek support for funding at the National Institutes of Health for research to find a cure. In addition, volunteers are needed to help educate Walk attendees about other advocacy initiatives of the Arthritis Foundation, such as ensuring access to affordable, life-changing medications; supporting pediatric rheumatologists; and raising awareness about the impact of this disease.

To find a Walk to Cure Arthritis in your area go to http://www.arthritis.org/programs-events/arthritis-walk/ and click on your state for a calendar of events. Then, click on the link of the location you wish to volunteer; on the left side of the screen locate Get Involved on the menu and click on Volunteer Registration.

When you fill out the Volunteer Registration be sure to select Mission/Advocacy from the Volunteer Area drop down menu. An Arthritis Foundation representative will be in touch with you as the event approaches to give you more details and direction.

 

August Recess Visits

During Congress’ August recess, most elected officials are back in their home states speaking with constituents face-to-face and listening to their concerns. The healthcare agenda is often top-of-mind during these recesses. During this time, it’s imperative that arthritis is part of the conversation.

The best way to do this is to take the time to schedule a visit with your Congressional representative. At your meeting you can share your story of how the disease impacts your life, the cost of medications to treat your arthritis and other daily challenges you face while managing your disease. The Arthritis Foundation has the tools to help prepare you for a successful visit including talking points, statistics, frequently asked questions, tools and tips. To find out how you can meet with your Congressional representative this August please contact your local Arthritis Foundation Office.

 

Ambassador Program

If you’re looking for an opportunity to advocate year-round for access, research, prevention and awareness of arthritis, consider joining the Arthritis Foundation Ambassador Program. Arthritis Ambassadors commit to building strong relationships with their Members of Congress and to advocate on behalf of the Arthritis Foundation’s policy priorities. Ambassadors commit two hours per month and a minimum of one year to the program.

Ambassadors from around the country take part in a one-hour call every other month. During this call, Ambassadors receive a unique assignment. You may be asked to write a message to your representative’s Health Legislative Assistant, or to attend a local town hall meeting to ask important questions about arthritis prevention, research, and cure. Whatever the assignment, you’ll be provided ample training and guidance to fulfill the duty with confidence.

For new Ambassadors, training takes place via conference call each quarter. On these calls you’ll learn the basics about how a bill becomes a law, how to report your activity, and strategies for establishing and maintaining contact with your representative.

If you have any questions regarding this program contact Deah Shaw at dshaw@arthritis.org, (202) 887-2921 or click here to sign up.

 

 

 


 

Sign Up as an E-Advocate

 

e-advocates

You, your friends and family members can make an impact for the over 52.5 million Americans affected by arthritis by signing-up to become an Arthritis Foundation e-advocate. Share this AForum e-newsletter with those who you think may be interested in joining the movement!

 

 

 


 

Get Connected

Find your local Arthritis Foundation office to get connected to programs and events.  Find out about all of our volunteer opportunities on our Volunteer Resource Page or fill out a volunteer application.

Manage your subscriptions to get the latest Arthritis Foundation e-newsletter publications sent to you. 

Feedback or ideas for AForum future stories? E-mail wbalmer@arthritis.org

Read back issues on the AForum Archive page.

Subscribe to receive future publications

 

Donate Button

 

 

Nebo Content Management System Tracking