Welcome to the latest edition of the Friends of CARRA e-newsletter. Please do your part in raising awareness by forwarding this newsletter to all of your family and friends.

These are exciting times in the field of pediatric rheumatology. The CARRA network has submitted many grants for research as part of the economic stimulus. Included in these grants is a patient registry which will ultimately answer many questions about these diseases. Friends of CARRA has pledged their support to help make these dream research projects a reality.

A special thanks to Stephane and Zel for raising awareness and research money for children with rheumatic diseases. Their efforts are inspiring and are spotlighted in this issue.

Another special thanks to Debbie Wright and all who made this year’s Race for CARRA and Hayhurst Triathlon a huge success. Through their efforts, the entire Pacific Northwest now rallies behind Friends of CARRA.

Stephane’s Story

My story is very simple‚ I am just a dad who is trying to do something to give my daughter a special moment in life that she will remember; and by the same token trying to help children who have Juvenile Arthritis like my daughter through Friends of CARRA.

Margaux was diagnosed with JA when she was 18 months old. It was heartbreaking to see my little girl unable to walk from one day to another. She would walk a bit, then stop and hold her knees saying that she was in pain and then we would have to carry her. I remember the injections that she had to have when she was 18 months; it was tough to see my daughter suffer the way she did. We did not know what the issue was‚ but her mum and I were lucky enough to have great rheumatologists who have helped Margaux and us along the way.

Margaux has been fortunate enough‚ thanks to her mum’s perseverance‚ to be followed in France‚ in England and now in Scotland by great professors.

Today Margaux is 11 years old and despite a period of remission of almost 3 years‚ she is still taking Methotrexate on a weekly basis. I admire her courage and the resilience that she demonstrates in coping with the illness every day of her life. Margaux lives with her mum on the other side of the pond and although I get to see her every month‚ I do miss her (even if I talk to her and her brother and other sister every day). So the most precious thing I can give her now is love‚ time and memorable “souvenirs”. “Life is not measured by the number of breaths you take‚ but by the places and moments that take your breath away”. I do believe running this marathon for her and for FoC is going to be one of those moments for her and for me. (which by the way is a true challenge for me as I only started running in January 2006 and I have only ran one other marathon‚ in Washington DC in 2007...it was for my 40’s !)

Thank You Zel!!!

Zel‚ a 5th grade student in Milwaukie‚ Oregon is making a difference for our kids. Zel noticed that her 1st grade buddy Anna‚ who suffers from Juvenile Dermatomyositis‚ had been missing a lot of school to go to the doctor. Zel was concerned and wanted to help. She had participated in the 2008 Race for CARRA and wanted to learn more. Every year at her school‚ students conduct two in-depth research projects. This spring Zel chose to do her project on JRA‚ JDM & CARRA.

The three main parts of the project include research‚ a presentation and a product. Zel did a great deal of research‚ including speaking to two of FoC’s board members and presented her information to her class. She is currently putting the finishing touches on her very organized product...a soccer clinic for kids grades 1-6th called Kicks for CARRA. She has lined up a number of volunteers to work at the clinic and all of the money raised will be donated to CARRA. Please contact debbie@friendsofcarra.org for more information. Thank you Zel!

The Annual CARRA Meeting

The 2009 Pediatric Rheumatology Research Annual Scientific Meeting‚ sponsored by CARRA‚ was held April 24-26 in Dallas‚ TX. There were 130 participants. The annual meeting offers CARRA members the opportunity to collaborate‚ network‚ breakout into small workgroups and discuss past‚ ongoing and future studies.

The main objective of the meeting is to improve the lives of all children with rheumatic disease by deciding which research projects should be pursued in the coming year and sharing results of past research. Much of the discussion at this year’s meeting centered around the development of a long-term patient registry.

Go to www.CARRAgroup.org to learn more about CARRA, see a list of current studies and to find a doctor in your area.

Race for CARRA T-shirts!

Race for CARRA event t-shirts are available for $5 each (covers shipping & handling). They are a great way to show your support for CARRA.

Please contact debbie@friendsofcarra.org for more information.