“Always remember that the future comes one day at a time.”
In all the volunteer work and advocacy I’ve done around juvenile arthritis, it’s one of my greatest privileges and accomplishments… and yet you’ve probably never heard of it. That wouldn’t be a problem at all if it weren’t for the fact that its very success and veracity depends on you knowing about it.
It’s the Juvenile Arthritis Alliance Leadership Group – also known as JAALG. It is a group of volunteers, one representing each of the ten regions of the Arthritis Foundation across the country. We are parents of children with arthritis, young adults that have grown up with JA, and pediatric rheumatologists and nurse practitioners. We meet via conference call every six weeks and in person once a year, in addition to other updates and communication electronically. Our main purpose is to be the voice of JA families across the country.
If I had to draw a little picture to demonstrate what JAALG should be – it’s like a funnel / megaphone. If there are issues across the country having to do with JA, we should be taking those issues back to the AF. The AF is a consumer driven organization and we are one of the conduits to amplify the voice of the JA constituents. Conversely, if there is information that the Foundation would like to disseminate, we are a tool for that, helping to take knowledge back to our local regions. We talk about everything from the SAK program (which was one of your top priorities in 2012-12), to advocacy efforts, awareness campaigns, local arthritis camp opprtunities, education days, and peer to peer connection opportunities. Essentially, we exist to try to improve the lives of families dealing with juvenile arthritis and to help the Arthritis Foundation understand our needs.
One of the goals we have had since I was nominated to be a part of JAALG – is to become more visible. With 12 years of JA under my family’s belt, I can safely say that I know many of the issues. But I don’t know all of them! Not even close! And if I am going to be a successful advocate for families in my region – they will at least need to know that I exist, and how to reach me. To that end, this link was added to the AF web site. Through this link, you can submit questions or suggestions to your own regional JAALG representative. You can also submit a question for a medical expert.
Change is never easy, and change is seemingly never quick. When my daughter was diagnosed, I was filled with a hotly burning passion and urgency to make things change immediately. I wanted a cure – I wanted everybody in the whole world to take this disease seriously – and I wanted our old life back. I still have that urgency inside- but I’m a little more patient now. A little. And I feel that the fantastic group of volunteers that I work with on JAALG is pushing forward, in the right direction to get to those things that we all want and need.
So, now you’ve heard of JAALG. In my opinion, there are some great things in the works for JA families, and the Arthritis Foundation is listening to your voice more than ever. I am incredibly proud of the staff and volunteers that I get to work with – It’s also very important to me that the work continues…with urgency… until there is a cure. So there it is. I am your mouthpiece in some respects. If you have something you really want me to say, I can’t say it if I never hear it from you first. I won’t always have the answer you are looking for, but I will always have an ear.