When I finally got plugged into the Juvenile Arthritis community and the Arthritis foundation it was just a few weeks before the Juvenile Arthritis Conference in 2012. I was so curious as to what the conference was so of course I did a little research. The Juvenile Arthritis Conference is the Arthritis Foundation’s signature, nationwide event for families affected by Juvenile Arthritis. It’s a chance for families affected by this awful disease to join together, offer each other support and encouragement and also to learn more about different ways to manage their child’s arthritis. It’s also an amazing chance for these JA warriors to meet other kids just like them. Kids that struggle with the same struggles they do on a daily basis. A chance for the JA kids to feel ‘normal’ for a change.
During the 2012 Conference I sat at my computer and read so many posts from parents sharing how excited they were for the conference. I read posts while they were at the conference of how wonderful it was and how they were learning so much. I remember hoping that the next conference would be closer to home so we could also attend. Unfortunately, the conference in 2013 was held in Anaheim, CA. Couldn’t have been any further away from us here in PA. To say I was a little bummed would be an enormous understatement. This year the conference will be held in Keystone, Colorado. Not quite as far but still far enough away to make it a challenge for us to go. I am determined this year though. I feel in my heart so strongly that I need to be there. Not just a want but a deep feeling that I actually need to be there.
One of the reasons that I blog about Juvenile Arthritis is to raise awareness. One of the bigger reasons I blog about JA is to share our personal experiences openly and honestly with other families who are new to the JA community. When you first get your child’s diagnosis you can find yourself confused and overwhelmed. Heck, I spent months in that state before I sought out the Arthritis Foundation and groups on FB dedicated to JA Families. I want to be there in those early stages for families to help them as they navigate the first few months of diagnosis. Help them through the fears and worries. Help them make sense of all the information that is suddenly thrust upon them. Help them know that while this is a big change in their life that there is HOPE and that they can find peace. I want to be a light to these families.
I know that if we are able to attend the conference this year I will be not only exposed to so many new families experiences but I will also have the chance to learn even more about this disease and in turn share my new knowledge with you, my readers. I will have the opportunity to be there for so many who cannot and relay the important information to them through my posts. It will also give my boys a chance to see the challenges that their brother may face in the future and help them be sensitive and understanding when he faces these new things.
While some local branches of the Arthritis Foundation do offer scholarships to families to help them get to the conference we will still need more funds to get us there. This year I decided that in addition to fundraising for our local walk team that we will also fundraise to help us reach our goal of attending this year’s conference. I would like to have at least one local event and I have some ideas for some online fundraisers. I have also set up a gofundme account so that anyone who feels compelled to donate can do so easily online.
I know to some this may seem like a selfish thing for us to do but the more we as a family learn about this disease the more we can help Monkey as he grows. He will ALWAYS have Juvenile Arthritis. Yes, he may go into remission but he will always have a chance to relapse. There is no cure for this…none. By learning more and being a more educated and knowledgeable advocate I can help in some small way to better his future. I can help make others more aware so that somewhere down the line there maybe be even more HOPE for him and other kiddos just like him.