News for Advocates of the Arthritis Foundation, Great West Region
Articles This Issue
Advocates in Action
Arthritis Foundation Advocates are leading the way – this summer more than ever! Find out how.
Profiles in Advocacy
Learn about Sandie Preiss and Mark Guimond, members of the Arthritis Foundation, National Office Policy Team, and get their take on keys to success with advocacy. Read their stories.
View these handy Tip Sheets on how you can improve or enhance your advocacy work.
Engage & Take Action
Youth advocate Beth Barnes took time out of her summer schedule recently to visit Idaho Senator Mike Crapo. Discover why.
Update Your Contact Information
Providing more detailed address information can help us to notify you of pressing advocacy news in your area. Get started.
Shop and Make a Difference!
Arthritis Foundation Advocates are leading the way – this summer more than ever!
Over the Fourth of July weekend the Great West Region hosted the National Juvenile Arthritis Conference in Keystone, CO, which included a record eleven sessions on advocacy for parents, young adults, teens, kids and even toddlers and babies.
These sessions were all led by volunteer advocates who are just like you – passionate people whose lives have been affected by arthritis. Their sessions were some of the most highly rated at the conference, so we’ve gathered their stories and tips to share with you
in the article below. Learn what motivates them, what they’ve learned along the way, and how you can take action.
The Arthritis Foundation, Great West Region extends a special thanks JA Conference Advocacy sub-committee Chair, Annemarie McMahill and committee members Heidi Barrett, Mary Colburn, Joy Ross, George Ross, Liz Smith, Allie Avishai, Jennifer Ziegler, Laura Keivel and Liz Atchison.
Also, don’t miss the video of Joy and George Ross talking to Camp JAM parents about advocacy and volunteering at the conference and be inspired by the video of Joy sharing the challenges of living with JA as a blind adult and mother of two children with JA.
Learn about Sandie Preiss and Mark Guimond, members of the Arthritis Foundation, National Office Policy Team, and get their take on keys to success with advocacy.
Mark Guimond, Director of State Legislative Affairs (pictured top right), and Sandie Preiss, Vice President of Advocacy and Access (pictured bottom right) are working hard in Washington, DC and are the new leaders in the fight against arthritis. We met up with them at the Juvenile Arthritis Conference in Keystone, CO to get their perspectives on arthritis advocacy.
What made you want to work at the Arthritis Foundation?
Mark: I thought it was time that I did something to help people. The meshing of the personal need and the professional need came right together, and that’s how I became the director of State Legislative Affairs.
Sandie: I was excited about the opportunity to work for the AF, and work in a new realm other than the corporate positions I’ve held previously. I thought it would be really neat to build a program on behalf of people who have arthritis!
What has been your biggest success at the Arthritis Foundation so far?
M: Being able to put together a plan to use the advocates we have. We have a wonderful advocate pool; people who have stories to tell and drive to do it. We instantly succeed by having that. Our future successes will be built upon those folks who are already there. The advocates and the ambassadors are the starting point for everything we do.
S: I think that we’ve opened the doors at our Washington Office to our partners, stakeholders, other patient groups we’ve engaged with, physicians groups that are aligned with our objectives, and also our corporate partners in a way that I think is new for the AF. It’s the synergies that we can create that really make success.
What are some of the specific activities and priorities of the Arthritis Foundation that you are excited to work on in 2015?
M: I’ll be focusing on the areas related to access: access to meds, making sure meds are affordable, prior authorization and all of the obstacles that stand in the way of care, and making sure we can reduce or eliminate as many of those obstacles as possible. Engaging everyone we can on the state levels, and trying to open doors to governors, legislators, stakeholders, and do everything we can to make sure our message is heard. We are ultimately responsible for our folks here. We want to make sure their voices are heard beyond all others. We want to mobilize and activate our advocates.
S: I think one of our overriding objectives is to enhance the status of arthritis on the public policy agenda. It’s not always listed in state laws as a chronic disease and people don’t seem to really understand juvenile arthritis. We hope to be able, through our advocates, to tell their story in a way that moves decision makers in the public policy arena. Our goal is to be the authoritative voice for people with arthritis as we move ahead in dealing with the public policy, and we really want to assemble the troops so we maximize their impact. It will be a new day for them because a lot of their focus will be on State Legislative arena, and work on new strategies to make them effective.
Life isn’t all about work! What do you do when you aren’t advocating for the AF?
M: Soccer. Period. That is my life outside of work. My daughter is an elite goalie and she travels a lot, so every weekend is taken up with soccer. It’s a great time for our family to be together because we all go to games. So we spend a lot of time in the car and on the field, but we’re together and it’s good family time. A lot of our friends are parents of kids who play soccer, and that is our family outside of our own…it’s an extended family that is based on soccer.
S: I love to travel, mainly love exotic travel (favorite exotic place was Africa and was life-altering) seeing friends, spending time with daughter, theater, movies and I really enjoy reading. I sound really boring. I’m not like a horse-back rider or anything like that.
What would be the single most important piece of advice that you would give a new advocate?
M: I would say don’t pretend you’re a lobbyist. That’s not what you need to be. Just tell your story from the heart. Tell them what it’s like. What your life is like with arthritis. What can and can’t you do? What would you like to do? Tell your story that way and let everyone else worry about how to draft legislation around that. There is a problem and a solution. Your job is to tell the problem, and we’ll find the solution.
S: Tell your story from the heart. Always convey both the facts and emotions to your story and remember what you’re telling the elected official is something they have no idea about, usually. It’s almost like you are telling them a secret. Be yourself.
View these handy Tip Sheets on how you can improve or enhance your advocacy work.
Youth advocate Beth Barnes took time out of her summer schedule recently to visit Idaho Senator Mike Crapo (pictured left).
Beth was joined by Dr. W. Patrick Knibbe (pictured right) for the visit, and they let Senator Crapo know about House Bill 460 and that arthritis drugs should not be placed out of their reach!
Congratulations Beth on helping to increase juvenile arthritis awareness.
Providing more detailed address information can help us to notify you of pressing advocacy news in your area.
The ability of the Arthritis Foundation to activate and mobilize our advocates depends on being able to notify you of legislation, legislative hearings and requests for action.
Our best advocacy happens when we know your full address along with your email. Knowing which congressional and state legislative district you live in is important because we can then more meaningfully focus our grassroots advocacy to specific legislators. During the course of a legislative session, it is important to target the most relevant legislators to the specific action that is occurring on a given bill. Sometimes we need to bring on co-sponsors, we may need to work a bill through committee, attain amendments or send our message to secure appropriate votes.
Shop and make a difference!
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