Thank you everyone, for your hard work and support in 2008!

We have very ambitious goals for 2009, which include but are not limited to, the start of a long-term patient registry, expanding our fundraising across the country and continuing to raise awareness of Friends of CARRA and childhood rheumatic diseases. We are a grass-roots voluntary organization that relies on all of our members and friends to do their part to help us achieve our goals. We ask all of you to PLEASE help expand our efforts and forward this enewsletter to your family, friends and coworkers.

Friends of CARRA would like to thank Dr. Brian Feldman and his team for their work in juvenile dermatomyositis. This was the first research project sponsored by Friends of CARRA. Dr. Feldman and his committee have created standardized care by developing a treatment protocol for children diagnosed with JDM!

In conclusion, please do not hesitate to reach out to me with any questions, suggestions, recommendations or advice. We want your input and we welcome your help and advice.

-Vincent Del Gaizo

Can YOU raise $100 for Friends of CARRA?

We believe, as do the CARRA doctors, that establishing a long term patient registry is key to finding both the cause and cure for our children. The registry will give the doctors and researchers a starting point. With the registry, they will be able to look for similarities and differences in patients, compare treatments and outcomes and find answers to questions that they have not had access to before.

FoC’s 2009 goal is to provide the start up costs to establish the infrastructure for the registry. We would love your help with this. We are asking each member to raise $100 for Friends of CARRA in 2009. There are many ways to achieve this, and they don’t have to take a lot of your time…you and your child could start a letter writing campaign, a penny drive, a bake sale, a candle party, etc. Just be creative and have fun. Your efforts will not only raise money, they will also help us raise awareness. If you have any questions or would like to request FoC brochures, please contact us at www.friendsofcarra.com.

Corporate Giving/Matching Gift Programs

Does the corporation you work for offer corporate giving/matching gift programs that can double a donation's value? If they do, Friends of CARRA would like to hear from you! Adding Friends of CARRA to their list of charitable organizations would help us increase our donations and the chances of finding a cure for pediatric autoimmune diseases. One corporation who already has FoC on the list is Hewlett Packard.

HP allows donors to contribute merchandise as well as cash towards their favorite charity. The cash portion is only allowed during a certain time of the year and once a year. They will match the cash, dollar for dollar, up to $1000 per employee's contribution. Getting FoC on the list was fairly simple only requiring FoC's nonprofit i.d. number, mission statement and website.

If your company offers such a program, please contact us. We would be more than happy to help you add Friends of CARRA to your company's list of charitable organizations.

Tottie's Pretties Banding Girls Together to Find a Cure for Childhood Arthritis When friends started to notice and inquire about the headbands I had created for my daughters, I shared that I was just making them for fun. But when I realized that other little girls loved them as much as my daughters, I realized I had something I could utilize in bringing about awareness and raising funds for childhood arthritis! “Tottie’s Pretties” were branded and in just a few short months over the summer, I was meeting moms at the park with my “bins” of headbands explaining Charlotte’s condition to those who asked. Charlotte (we call her “Tottie”) is our 3 year old daughter who was diagnosed with pauci-JRA and has battled uveitis since October of 2007. Medicated by monthly Remicade treatments and weekly Methotrexate, Charlotte has kept the uveitis and flares at bay since September. In one short year (but a long 1st year of learning and coping), Tottie’s Pretties sold enough headbands to donate $1500 to CARRA in 2008. Tottie’s Pretties are $10 a headband and are currently sold nationally on ETSY (a site for everything homemade). For Portland area locals, bins of headbands go on “overnighters” as “trunk shows”. More styles and colors to come in 2009 with loftier goals of donation ambitions! Charlotte’s New Years goals for her 3rd year will be to continue wearing a tutu every day, dreaming of being a ballerina and staying healthy! Thank You! Erika Cox Momma to Charlotte (and her sisters Emma & Ellie) Creator of Tottie’s Pretties headbands E3cox@hotmail.com http://www.reece99.blogspot.com http://www.tottiespretties.etsy.com