Monday, June 2, 2008

Angels Among Us

Our Friends @ Metro Parent Magazine did an amazing full page article on the RACE FOR CARRA. Sometimes when you read stories of children & their trauma & suffering & it seems distant. But the fact is, I know these girls they are speaking of & this is why we walk, to find a cure for them, for Charlotte & for all the families that have been touched by this disease. I cant even imagine being in their shoes: thyy face every day & they try hard to do their best & be "normal kids" even when it hurts & that's why they are....

angels among us
34 Metro Parent • www.metro-parent.com • June 2008

There are over 300,000 children in the US suffering from juvenile arthritis and other rheumatic diseases. These diseases attack children’s joints, muscles, skin and internal organs. These youngsters live in chronic pain and take harsh medications in the hope of controlling their symptoms.

Imagine sitting in class all day as arthritis causes your body to stiffen and swell; attempting to write and complete schoolwork as your wrists and fingers can barely grip your pencil; watching your friends and classmates run and play while you sit, watch and wish that you could remember what it’s like to live without pain. By the time you get home from school, all that your 6-year-old body can find the energy to do is take a nap. Then you eat dinner, take your medicine and go back to bed, only to wake up the next day to start all over again.

Imagine watching as your 3-year-old daughter’s body makes a devastating transformation. Her once strong and active body can no longer walk across the room, climb up the stairs, or get into her own bed. She is withering away day by day, until she is just a shell of herself. Climbing into the bathtub is impossible and sitting on the floor is excruciating; you carry her everywhere. After many doctor appointments and tests you get her diagnosis and learn that she is one of only 5,000 kids in the entire United States that is suffering from Juvenile Dermatomyositis.

These are just two-real life examples of the devastating effects rheumatic diseases have had on local children and their families. Parents of kids suffering from rheumatic diseases feel helpless. We take our kids to the doctor, give them their medications, help them do their exercises, try to answer their difficult questions and love them through it all, but we can’t take their suffering away. We do our best to encourage them to have a “normal” childhood, but their diseases often make this difficult.

Friends of CARRA & CARRA
Our hope lies in the research being done by the Childhood Arthritis & Rheumatology Research Alliance (CARRA). CARRA is made up of 246 pediatric rheumatologists from across the U.S. and Canada. CARRA research is focused on six disease categories: Juvenile Arthritis, Lupus, Dermatomyositis, Scleroderma, Vasculitis and Pain & Health Related Quality of Life. They have come together to collaborate and conduct high quality clinical research to find the answers to many questions: What is the cause? What are the best treatments? What are the long term outcomes? What is the cure? CARRA doctors are working together to find the answers, but funding the research is the biggest obstacle.


Friends of CARRA is a national nonprofit, fundraising organization established by a group of parents in 2005, to support CARRA’s research efforts. Friends of CARRA raises money through private donations, grants and various fundraisers put on by parents and friends across the country. The group has no paid employees. This helps to ensure that all the money raised, goes
toward our mission: to support the discovery of a cure and improved treatments for childhood arthritis and related diseases and to increase public awareness of childhood rheumatic conditions. Visit http://www.carragroup.org/ for more information.


Friends of CARRA - Helping Find a Cure for Childhood Rheumatic Conditions
Race for CARRA
On Sunday, June 8, the Third Annual Race for CARRA will take place along the Eastbank Esplanade and around the Oregon Convention Center in Portland. It is a 5k run/walk for the
entire family. Visit http://www.raceforcarra.com/ for information and to register.
Details about CARRA can be found at http://www.carragroup.org/.

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