Meet Bailey-a brave little girl with JRA

Please take a few minutes and watch this touching video about Bailey, a brave 5-year old girl who has JRA. You can learn more about Bailey, her parents and their journey treating JRA at their family blog, Warren Family-Bailey's Blog. Here's a message from her mom that she sent to me through CreakyJoints.com:

Hi. Thank You so much for all you do for kids like you & my daughter Bailey! We are so frustrated that no matter how many walks, talks, interviews, etc....the World doesn't know about this disease & the way kids suffer from it - Bailey also Has Uveitis - Its tried to steal her sight 3 times now!

For kids with arthritis: Looks Can Be Deceiving

September 14-20 marks National Invisible Chronic Illness Awareness Week and Lisa Copen, director of Rest Ministries, has invited me to be a guest on her Internet radio show to discuss the fact that symptoms of arthritis aren’t always “visible.”

If you have not yet read my book Juvenile Arthritis: The Ultimate Teen Guide, I encourage you to pick up a copy so you can read Amanda White’s story, which begins in Chapter One. Amanda was diagnosed with arthritis at the age of 14; she is now a college sophomore. To look at her, you would never know that she lives in almost constant pain. It is because she looks like other girls her age that people are unaware of her limitations or choose to brush off the severity of her condition and push her to do things she is physically incapable of doing.

In her case and for many others with arthritis, the old saying holds true: “Looks can be deceiving.” For this reason, I continue to work to educate others of the fact that arthritis affects everyone differently and some days it may be worse than others. In my case, it has clearly taken a toll on my body and left me with many visible contractures or deformities. But for many others, while the disease is “invisible,” the pain it causes is just as real.

To get your "I'm Blogging for..." badge, visit the Invisible Illness Week Blog.

Congrats to Kayla and her Mom

Last month I held a contest to win a Nintendo Wii (donated by Ag Apparel) and the EA Sports Active game (donated by EA Sports Active). We received numerous inspirational stories of people who would use the prize package to help them on their journey or to help someone else. One entry really resonated with me and I'm happy to say that Kayla was the lucky winner. Here is what Kayla wrote:

I would love to win this contest for the most amazing woman I have ever met...My mother.

My mother is simply amazing. I have never met a woman who is more generous with her love and time. Her whole life, she has put the needs of others before her own. She went without many things while raising me on her own because she never wanted me to go without. She never wanted me to be affected because there wasn't a father figure in my life. This incredible woman gave so much of herself for me, and for that I am forever grateful.

Now is the time for my mother to focus on herself and her health. Her joint pain has prevented her from walking outside for exercise because it hits her so suddenly. Every time she comes down for a visit, she talks about buying a Wii and exercising in the comfort of her own home...But atlas, money doesn't grow on trees. The economy hit my mother hard, and she has been without a job for many months now. Day in and day out, she searches for a job, but like the millions of other Americans, she continues to be unemployed.

I would love for my mother to win this contest for her health and for her happiness. Getting in shape would not only boost her confidence and help her realize how beautiful she is, but it would greatly improve her health. And maybe, just maybe it would help me get that mother/daughter picture I have been asking for, but always get "I'm too fat" back as a response.

Thank you for taking the time to read this. :)

Now Kayla (aka @Chubby_Stubby_K):

My name is Kayla and I am twenty four years old, currently on a mission to lose 125 pounds. With the love and support from my amazing mother and my wonderful Twitter/Blog Friends, I have managed to lose forty pounds and have adapted living a healthy lifestyle. I decided to blog my journey as I found that by reading blogs from other people and their weight loss journeys, it helped to not only inspire me, but keep me focused on my own journey.

The link to my blog is: http://chubbystubbykay.blogspot.com/

Kayla will keep us posted on how her mother is doing with the Wii and the game. Congratulations and we look forward to sharing her progress!

Scenes from News 12 NJ

My TV News debut!

This past weekend News 12 NJ aired an episode of 12 To Your Health where I spoke to host Janine Stafaci to spread awareness about Juvenile Arthritis and educate families and children about the disease. Joining me was Dr. Nandini Moorthy, a Pediatric Rheumatologist at UMDNJ/Robert Wood Johnson, Here are some of the photo highlights.

Stay tuned for the video!

Such an honor...

Recently I was honored for my work and advocacy by the Catastrophic Illness in Children Relief Fund at their annual awards dinner. And I got to meet Gov. Corzine too!

To learn more about the CICRF, visit their site.