This week’s “Take Action Thursday” is written by the lady who, quite literally, wrote the book on Juvenile Arthritis. Kim’s blog is an extraordinary source of information for JA parents, but I encourage everyone to take a look. Her posts are full of encouragement and information that is useful for any parent.
Kimberly Poston Miller is the mother of two sons with very different cases of Juvenile Idiopathic Arthritis. Over the past decade, she and her family have navigated a number of diagnoses and conditions related to JA.
In the fall of 2013 Spry published her first book Living With Juvenile Arthritis: A Parent’s Guide to help other families acquire the information it took the Miller’s nearly a dozen years to compile.
With a BA in psychology, an MBA, post graduate study in Medical Informatics and several years in the field of medical management, Kim’s perspective is that of a well rounded professional with the realism of a parent who has been in the trenches.
When I tell people my children have Juvenile Arthritis, I rarely get a response that doesn’t include a quizzical look or a question or two. Most people are shocked to find out that kids can get arthritis, and have never heard that certain types of arthritis (rheumatic illnesses) are actually forms of autoimmune disease, not “just” aches and pains.
If these same folks give me an extra minute or two of their time, they can’t believe that JA can be a potentially life threatening illness, and that it is relatively common. In the USA, one out of every 250 children is believed to have some form of the disease, and worldwide, conservative estimates state 1 of every 1000 children suffer from JA. That’s a lot of children. Chances are, if you don’t know someone personally who struggles with JA, you know a friend, family member or co-worker who does.
Yet it seems like no one knows.(see Sophia’s story)
The Juvenile Arthritis Association recently publicized some interesting facts and figures regarding spending and research for pediatric rheumatic disease.
Despite its prevalence, and in spite of its life threatening potential, Juvenile Arthritis continues to be misunderstood, underfunded, and relatively unknown, but you can help change that, and it won’t even cost you a penny.
The Arthritis Foundation has an amazing program for advocacy that is making an impact on all forms of arthritis. In less than 5 minutes, you can sign up to be an E-Advocate, which requires very little time or commitment. As an E-Advocate, you will receive “action alerts” via email whenever there are important arthritis-related issues being discussed on capital hill. Your only “assignment” is to make your opinions known to your Congressmen, via a phone call, email, or correspondence of your choice. The AF will even provide a form letter. It couldn’t be easier. Just click this link to get all of the details, straight from the AF.
If you would like to take a more active role, the Ambassador Program is the way to go. Although it is similar to the E-Advocate program, being an Arthritis Foundation Ambassador requires a little more time commitment. Every other month, there is an informative one hour webinar (that you can also listen to as a recording if you can’t make the broadcast) that highlights the key issues, and “assignments” for the coming month. The webinars also give step by step instructions on how to complete the assignment, as well as educate the listener on a number of arthritis related topics. Assignments typically take 1-2 hours per month to complete, and can range from attending a town hall meeting in your area, to contacting your congressmen, to writing a letter to the editor of your local paper. The AF provides all the training, free of charge. In addition, after a year of serving as an Arthritis Ambassador, participants who achieve platinum status (completing all assignments) are eligible for an all expenses paid trip to Washington DC for the Arthritis Summit.
Last year, my sons and I attended the summit, and this year, with platinum status, we won a travel award, so we will be back in March. As a homeschooling mom, I felt it was an incredible opportunity on many levels. My children were able to participate in the Kids Summit, and create their own letters to their congressmen while learning about legislation that could impact them. They learned how they could make a difference. They were able to see, first hand, how our government works, and play a role in the passing of certain legislation. Even though they weren’t voting age, they had the opportunity to visit with their elected government officials, tell their story and make an impact on what is happening in Washington D.C. It is an amazing educational experience, but it is also empowering. I believe that we get just as much out of participating in the program as the AF gets from us!
But beyond all the perks, the real story is that we are making a difference. We are spreading the word about JA, and fighting for awareness, funds and research. We want to bring it out of the shadows and to the forefront so that the hundreds of thousands of children who are affected can get the help that they deserve. As the number of children with JA grows, so should the number of people who want to help. I hope you will join me in fighting for them.
Are you, too, seeking to save the earth, promote world peace and raise productive citizens without expending too much effort?
If we work on our goals together, they may be a little easier to achieve!