News for Advocates of the Arthritis Foundation, Great West Region
Articles This Issue
Have You Explored the Health Care Exchange Websites?
If so, we want to hear your feedback via our online survey. Complete survey.
Advocates Bringing It Home: Voices from the Great West
Photo stories of advocates across the Region. Read more.
Spread the Word about Arthritis Advocacy this Holiday Season
When seeing friends and family this holiday season, learn how to use the opportunity to discuss arthritis advocacy.
Advocates In Action: Glory Blue Earth-Highley
A Montana family incorporates advocacy into all that it does. Read their story.
More Americans Limited by Arthritis Pain
Nearly one in ten people say that joint pain impacts daily activity. Learn more.
2014 Arthritis Foundation Advocacy Summit Dates Announced
Find out more details on how you can get involved to make change for those with arthritis.
If so, we want to hear your feedback via our online survey.
Now that the Health Care Exchanges have launched as part of the Affordable Care Act, we want your feedback. Your insights will allow us to better educate those affected by arthritis on this new enrollment process.
Please take a moment to complete the survey below:
Photo stories of advocates across the Region.
Arthritis advocates in Colorado met with Representative Mike Coffman in August. Advocates Anita Fricklas, Julie Butscher and her children, Andy and Katie, discussed the need for the pediatric loan repayment program with Representative Coffman.
Felicia Bawden (pictured at left) and fellow advocate Ashleigh Smith collected a record number of advocacy letters at the Spokane Jingle Bell Run/Walk!
Montana advocates joined Arthritis Foundation staff on October 2 for an Advocacy Training in Montana. Topics included the impact of advocacy on funding for research and access to care. While honing their skills at sharing their stories more effectively, advocates also got to know others dedicated to fighting arthritis issues.
When seeing friends and family this holiday season, learn how to use the opportunity to discuss arthritis advocacy.
Advocacy has a far more friendly face than the political headlines – especially when we take the time during holiday get-togethers to talk about important issues with friends and family. This holiday season, speak up about your involvement with Arthritis Foundation advocacy action. You may find yourself surprised at how many people you know who draw strength and hope from your efforts.
An easy way to spread the word is by inviting friends and family to join you in asking Congress to support arthritis research funding at the National Institutes of Health. When polled, 78% of Arthritis Foundation volunteers believed that research for a cure needs to be a priority in Washington, DC and we couldn’t agree more. The Arthritis Foundation continues to support research for a cure as the world’s largest nonprofit contributor to arthritis research. By signing this petition yourself and asking friends to join you, you can exponentially multiply our efforts!
Will you join us?
Click Here to Sign the Petition.
And consider sharing this petition through social media using this link:
A Montana family incorporates advocacy into all that it does.
Whether in an urban downtown or a rural area, advocates can make an impact wherever they live. Glory Blue Earth-Highley and her family fight for change in their community as arthritis advocates. Their passion stems from the diagnosis of arthritis in their daughter, Dani.
Name: Glory Blue Earth-Highley
Location: Anaconda, Montana
How did you get connected with the Arthritis Foundation?
My daughter Danielle (we call her Dani) has been diagnosed with juvenile arthritis. She was showing symptoms as early as 18 months old of a low-grade fever, pinkish knee and elbow joints that were warm to the touch, and stiffness and pain. She is five years-old now.
I always knew there was an Arthritis Foundation out there. Once Dani was officially diagnosed I began going to the library to research juvenile arthritis online and through books. I found the Arthritis Foundation’s website, and began reading their articles and newsletters.
We found out about one of the Arthritis Foundation’s camps for kids with arthritis, Camp Limberlimbs in Montana, and attended for the first time in 2010. It was amazing in the sense that I didn’t feel like I was alone anymore. It was such a relief to meet other parents there and know that we weren’t the only family dealing with juvenile arthritis. We could sit there together as parents and talk over a cup of coffee or tea about our shared experiences. Whether it was stories or advice over school 504 plans or accommodations that might be needed for our children in school – it was all so helpful.
How have you been involved as an Arthritis Foundation advocate?
We found out about arthritis advocacy at Camp Limberlimbs. We gradually started getting into it and learning more about it. As a family, we realized that we can do this. We can tell our story. Even the littlest advice could make a difference and help bring relief to someone else with arthritis in some way. We put Epson salts and lavender in Dani’s bathwater and it helps her – so maybe advice like that can help someone else, too.
We started off by making a few phone calls to legislators and talked to people about arthritis advocacy issues. We volunteer at a local living history project where we portray events in Alder Gulch from the period of 1863-1865 and wear period dress. A lot of the community, and many legislators, often come through these events, and we use it as an opportunity to tell our arthritis story.
We also do advocacy through the Missoula Jingle Bell Run/Walk. We form a team each year, Team Catbird, and Dani is our team captain. Our family asks our friends, daughter’ friends, past Girl Scouts (I am a co-Girl Scout leader) and other family members to join our team.
What makes a good advocate?
I believe that anybody who is dealing with arthritis can be a good advocate, whether you are a parent, individuals affected by arthritis or love someone affected by arthritis.
I was very shy about advocacy at first. But people will gain confidence the more that they do it.
The Arthritis Foundation considers itself a volunteer-driven organization. Why do you believe that this is so important?
There is nothing better than the heart of a volunteer. And I don’t mean your physical heart – but the love that you have in you. There is a core drive in volunteers that they want to do it from their desire to help.
What are some of your favorite Arthritis Foundation advocacy experiences?
I sometimes get nervous about talking to legislators, but the Arthritis Foundation Advocacy Ambassador program helps me feel better prepared to do it. I love taking part in the monthly Arthritis Ambassador calls from the Arthritis Foundation, National Office. We learn about research, policy updates and get assignments. This is great because I get the chance to apply my own experiences to my advocacy. So, for example, if I have to call a legislator to talk about the need for more pediatric rheumatologists, I tell them how we have to drive two hours one way to go to Dani’s doctor because her specialists are so rare.
The Jingle Bell Run/Walk is great for advocacy, too. We make it fun. We talk to so many people about joining our team or donating.
Was there ever another volunteer or advocate that impacted your life?
Not specifically – but I’m Native American, so native issues are also a big deal to me. People in general who fight for our health and our kids’ health, whether it’s Native American issues or arthritis issues – they are important to me.
For those readers who have hesitations about advocating for the first time, what would you say to encourage them?
Take it one step at a time. Don’t get overwhelmed with all the things that you could do as an advocate… do what you can. Just start talking about it with people – anyone. It will give you the confidence as you do it more and enable you to help others.
Find out more:
Read Glory’s story, from her own perspective, of Dani’s diagnosis and progress.
Nearly one in ten people say that joint pain impacts daily activity.
A government report from the Centers for Disease Control and Prevention (CDC) released recently found the number of adults with arthritis is rising by about 1 million people each year, and along with it, the debilitating impact of the disease. The report reaffirms previous predictions that cases of arthritis would rise rapidly with the aging of the population. However, the impact of arthritis on activity limitations is exceeding previous estimates, according to the Arthritis Foundation.
“The sharp rise in activity limitations is alarming,” says Arthritis Foundation President and CEO, Ann M. Palmer. “More people are hurting when they walk and climb the stairs, and they may be curbing activities they love due to severe pain and limited mobility caused by the disease. We must reverse this trend by investing more dollars in research to find a cure for arthritis and providing health intervention programs to help people be more active today.”
According to the CDC study published in the November 8 issue of Morbidity and Mortality Weekly Report, arthritis affects the daily activities of about 23 million adults, up from 21 million in 2009, and not far from the projection of 25 million that wasn’t expected until 2030.
The report also confirms the disease is common, impacting about 23 percent of the adult population. The 2013 report shows that the number of adults with doctor-diagnosed arthritis climbed from roughly 50 million to 53 million over the last three years. Arthritis also carries a heavy financial burden, costing the U.S. economy $128 billion annually.
Among the report’s findings from 2010-2012:
“The number of U.S. adults with arthritis is increasing. This amounts to an average increase of approximately 2,400 individuals per day,” says Dr. Wayne H. Giles, Director of the Division of Population Health at the CDC. “Because arthritis occurs so often with other conditions like diabetes and heart disease, arthritis limitations may be interfering with the recommended management of those conditions, especially in regards to physical activity.”
The Arthritis Foundation is working to help address this ever-growing problem by advocating for policies and programs to help people get treatment and care, driving innovative research toward a cure, and providing information and programs to help people manage their disease. In addition, events such as the Arthritis Foundation Jingle Bell Run/Walk for Arthritis bring the community together each year to raise funds to fight and cure arthritis.
To learn more about the impact of arthritis and what you can do about it, visit www.arthritis.org/newsnov2013.
The Advocacy Summit will be held March 24-26, 2014 at the Capital Hilton in Washington, DC.
About the Summit:
The Advocacy Summit is an annual event when people living with and affected by arthritis come from every corner of the United States to convene in Washington, DC. There they learn how to advocate and build a continuing relationship with their Members of Congress and their staff.
Together, with other advocates and Arthritis Foundation staff, meet with legislators and staff on Capitol Hill to tell Congress that ignoring arthritis is unacceptable and more needs to be done for people with arthritis. If we don't let Congress know that something must be done about the pain, cost and disability of arthritis, no one else will!
This year, we have both regional and national scholarship opportunities available! Applications are due by December 20, 2013. To learn more about scholarships and to apply go here: http://www.arthritis.org/advocacy/advocate-news/advocacy-summit/travel-award/
Registration opens on December 20, 2013
Why It’s Important:
"I keep coming back to the Summit because I want to find a cure for arthritis. Being one voice is good; joining my voice with others is even better. For my legislators to be able to put a face with a story and to feel the emotion behind it is much more impactful than a letter in a mailbox. I want the awareness I raise to have an influence on legislation passed to improve the lives of people with arthritis." - Amy
"We keep coming back to the Summit because it's important to continue telling our story and sharing the Arthritis Foundation's advocacy priorities with Congress. Each story makes a difference." - Kate
"I keep coming back to the Summit because there is nothing like a face to face opportunity to tell your member of Congress what is important to you. Having my kids there puts a face on the story. Traveling all the way to Washington PROVES how serious we actually are. We also love the fellowship and education opportunities provided to us by participating." – Kim
Find out more:
Visit the Arthritis Foundation Advocacy Summit headquarters to find out more information about this year’s Summit.
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!
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.
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