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News for Advocates of the Arthritis Foundation, Great West Region
Summer 2015

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Articles This Issue

The Advocacy Summit – How You Can Help, Too!
A summary of the Arthritis Foundation's work at the 2015 Advocacy Summit. Learn more.

Tomorrow’s Leaders, Today
Young adults affected by arthritis are a powerful force in arthritis advocacy. Discover why.

Meaghan Victory Honored at Arthritis Foundation Advocacy Summit
Local advocate named as 2015 emerging leader in advocacy. Read her story.

Advocacy Leadership Volunteer Opportunities at Home
Are you ready to leverage your personal experience to help others? Find out how.

Advocacy Summit in Summary
View scenes from the 2015 Arthritis Foundation Advocacy Summit in Washington DC. 

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The Advocacy Summit - How You Can Help, Too!

A summary of the Arthritis Foundation's work at the 2015 Advocacy Summit.

 

2015 summit delegation

The Great West Region’s 2015 Advocacy Summit Delegation, 28 advocates strong, included eleven volunteers who earned travel awards through their year-round advocacy efforts on behalf of the Foundation. The region is especially proud to have counted six children and five young adults with JA amongst the delegates.

The Summit was a whirlwind of training and visits, with delegates from 13 congressional districts making 29 meetings with Members of Congress and staff. Participants this year responded enthusiastically to a new Advocate Toolkit, now available to you too! Take a look at a few of the new tools below and download the full toolkit online.

  

 

 


 

 

 

 


Tomorrow’s Leaders, Today

Young adults affected by arthritis are a powerful force in arthritis advocacy.

 

Advocates are our most powerful weapon against laws and regulations that create barriers for people living with arthritis. The best advocate is someone who knows what it’s like to fight the everyday battles – someone like you. By sharing your personal story with legislators and lawmakers, you can become part of the solution.

Young adult advocates from across the Great West Region share their perspectives:


“Advocacy is a way to handle your disease internally and externally.  Internally, I have to work on not being frustrated and externally I am using it as a sense of purpose.” Vanessa Wyser-Pratte

“I have to explain to people that I have arthritis when those I’ve known ask about activities I have done in the past and why I have stopped. I usually start off by telling them RA is an auto-immune disease so it really doesn’t matter what your age is. I tell them my whole family has arthritis, so I do too. I used to play roller derby, but that became too difficult to continue.  I still stay active, but full contact sports can get difficult after a while.” Krystin Bogan

“You don’t see people have cancer until they get chemo. Lupus is a mask and most people don’t see the amount of pain you’re really in.” Elyse Lewan

“Unfortunately it's common for someone to look at me doubtfully and exclaim that it doesn't look like I have arthritis, or I don't look like I'm sick. I don't despair when I hear these questions, because it gives me an opportunity to let people know just how common arthritis is. People are constantly surprised to learn about this invisible disease and the fact that it affects more than just their grandparents. I tell them that if I were able to remove my mask and show the exhaustion, pain and symptoms that I'm experiencing I would look like I'm on my deathbed. The fact that arthritis is an invisible disease makes it difficult for the population to realize how big of a problem it really is. Working with the Arthritis Foundation, attending the Advocacy Summit and being involved in local and regional committees has armed me with an arsenal of facts, knowledge and the ability to explain just what us arthritis sufferers go through. I never have had anyone walk away without being fully informed of the impact that arthritis has on our society - on both a local and national level.”  Ashly Lewan

“I tell people you can’t really see arthritis. You can’t really see the pain all of the time.  I think the one thing that’s hard for people to understand is its changing every day. It may be there one day and not the next.” Mason Merager

“I try to make the situation useful instead of frustrating.  I put on my teacher hat and use it as an opportunity to expand their understanding.” Vanessa Wyser-Pratte

“Some people know that it affects young children and it is automatically associated with older adults, but it’s also good to inform them that young adults in their teens and 20’s have it too.” Elyse Lewan

“When at the Summit, attending our last meeting of the day, the legislative assistant came right out and said ‘I was expecting a much older crowd.’ I replied with 'Wow, thank you for saying that.' Mostly because I was impressed by his willingness to admit what he didn’t know.  Anyone can get arthritis.” Vanessa Wyser-Pratte

“Ever since I got my service dog, Toby, he starts the conversation with people about arthritis. I have more conversations about arthritis with people out in the community.  Kids in my school are used to seeing Toby and know all about me.” Mason Merager

 

Sign-up as an Arthritis Foundation advocate.

 


 

Meaghan Victory Honored at Arthritis Foundation Advocacy Summit

Local advocate named as 2015 emerging leader in advocacy.


meaghan accepting awardMeaghan Victory was presented the 2015 Emerging Leader Award in Advocacy at the 2015 Arthritis Foundation Advocacy Summit, held March 23-24 in Washington, DC. The award goes to someone under the age of 21 who has demonstrated public service in their community to those impacted by arthritis.  As an Arthritis Advocate, Meaghan actively fosters relationships with her legislators and even helped convince Senator Maria Cantwell to join the Congressional Arthritis Caucus. 

"Because of all of us, new medications are being discovered and researchers are able to continue searching for a cure,” Meaghan said. “Actively doing things to get the word out and promoting the Arthritis Foundation as much as possible is so important. We are not only helping ourselves, but everyone who might be diagnosed with arthritis at some point in their lives.”

Advocating since 2009, Meaghan encourages her friends and family to send letters to their legislators and continually updates her legislators on her progress, personal victories and arthritis issues. Meaghan has been the captain of TEAM VICTORY, an Arthritis Foundation Jingle Bell Run/Walk team that has been active for more than seven years, raising more than $75,000 and recruiting more than 600 runners.  In 2010, she served as the Jingle Bell Run/Walk Honoree in Seattle.  That year she was the nation’s individual top fundraiser as well as the nation’s fifth best team fundraiser. Meaghan has been a research study participant through Seattle Children’s Hospital. She is currently a nursing student at Gonzaga University 

During the Advocacy Summit, Meaghan, along with hundreds of other Arthritis Advocates, urged Congress to support legislation that will give all patients more affordable access to life-changing medications; create a stand-alone arthritis program within the Department of Defense to meet the growing needs of active military personnel and veterans; and recruit new members to the Congressional Arthritis Caucus, which strives to raise awareness about arthritis, works toward the goal of educating all members of Congress about how arthritis impacts their communities, and outlines how members of Congress can support federal and local efforts to address arthritis in all its forms.

 


 

Advocacy Leadership Volunteer Opportunities at Home

Are you ready to leverage your personal experience to help others?



As an advocate, you know what it’s like to fight every day battles. In today’s rapidly changing world of healthcare, your voice as an advocacy leader is crucial to focus conversation on what adults and children with arthritis need.

New State Advocacy Committees are forming in the Region, tasked with growing the legion of arthritis community advocates, addressing policy priorities and bring arthritis-related issues to the forefront.

If you are interested in working collaboratively with volunteers and staff to make change, we invite you to apply to join an advocacy committee in your area. For more information or to apply, please email Johanna Lindsay at jlindsay@arthritis.org.



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A Word from the State Advocacy Chairs:

“I've had rheumatoid arthritis since I was 27 and being a volunteer at the Arthritis Foundation has been a wonderful experience for me. I've been involved with the Arthritis Foundation assisting with many events such as advocacy, the Bone Bash, Jingle Bell Run/Walk and promoting awareness of health care coverage.

I'm super excited to be part of the Walk to Cure Arthritis this year. It's the first year that I've organized a team. The event is on a flat course so most people are able to walk, and dogs and kids are welcome. I'm really pleased to have friends and family who are willing to support me with donations and by joining my team.  What makes this event most exciting for me is that it celebrates both people triumphing against arthritis on a daily basis as well as progress that is being made towards treatments.”

Laura Genoves, Advocacy Committee Chair, Washington

“At the first meeting of the Utah Advocacy Committee, I found it fun to see the engagement of people new to advocacy and their willingness to become involved. We discussed barriers to access in Utah and across the country, as well as areas for legislative input. By providing the members with the tools to do so, we each sent emails to our state legislators, advocating for Utah HB 279, which required physician notification when a biologic had a biosimilar substitution. This bill subsequently passed and has been signed into law. Great results to further energize the committee, to continue their advocacy efforts!”

Mary Colburn, Advocacy Committee Chair, Utah

“Advocacy has always been an important part of the work that I do as a volunteer for the Arthritis Foundation. Now it is even more interesting as work at the state level moves at a faster pace than it does at the national level. We were able to get a bill passed in the Senate and the House of the State Legislature and signed by the governor (SB71) in less time than we could get a bill to appear on the floor of the Senate in Congress. For that reason, we have to be on our toes and keep ourselves always looking for that opportunity. More is coming.”

Anita Fricklas, Advocacy Committee Chair, Colorado

“Last summer our family had the opportunity to teach children and young adults about how to advocate for themselves by telling their story.  Those few short days transformed us.  We had the unique opportunity to experience some of the most heart breaking stories told by some of the most positive and tough minded people you could ever hope to meet. 

To say they are inspirational vastly undersells them.  We came home having received more than we gave and realized we had to seize any opportunity to speak for those who are not always in a position to advocate for themselves.  Those reasons they cannot always advocate for themselves can range from any combination of financial, remote location or health issues. 

Our family is in the unique position to not have those barriers and we love sharing our story and the stories of others who are impacted by arthritis.  We know these stories can move people and influence outcomes. It is something we get to experience with increasing regularity and is what drives us to seek out any platform that allows us to do one simple thing:  to use our story and the stories of others to bring awareness to arthritis and its impact to influence change.”

George Ross, Advocacy Committee Chair, Oregon



For more information on becoming an arthritis advocate, contact Johanna Lindsay, jlindsay@arthritis.org.

 


 

Advocacy Summit in Summary

Scenes from the 2015 Arthritis Foundation Advocacy Summit in Washington DC


Volunteer advocates from across the Arthritis Foundation, Great West Region gathered in Washington DC to share their stories with legislators and to be champions for change related to arthritis policy.



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Sign-up as an Advocate

 

Sign-up as an Arthritis Foundation advocate and let legislators and lawmakers know what it's like to fight the everyday battles of arthritis.  Your story can make a difference.

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Find your local Arthritis Foundation office and get connected to local events.  

Discover volunteer opportunities on the Volunteer Resource Page or complete a volunteer application.

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