Wednesday, September 11, 2013

Volunteerism & Leadership: My role with CARRA: Childhood Arthritis & Rheumatology Research Alliance

Our family
I share our family story because I'm not just the mom of three girls who's passionate about their education in the Camas School District.  I'm also an advocate for my daughter.

When our daughter was diagnosed at age 2 with rheumatoid arthritis, I threw myself into the throws of investigating, studying & understanding the disease & the medications available for her. We became part of the team (of many) trying to make decisions on what path to take to make her well.  Research, research, research!

Now at age 8, Charlotte is happy & healthy on an immune suppressant low dose chemo drug & Humira.  Charlotte has uveitis, arthritis in the eyes and visits the pediatric ophthalmologist frequently.  During the beginning battle when her eyes were at the top of the flare scale, we looked to studies as to situations similar to hers, so together with her rheumatologist, ophthalmologist & uveitis specialist, we knew which path to take.  There were very few studies & no situations exactly like hers.  Reaching out via my blog, I met moms across the nation and found their stories differed as well: some kids go on one drug while others are prescribed another.  We sought the guidance of a uveitis specialist in Cambridge who recommended a specific route for Charlotte.  That route worked for four years & failed her the first week of 1st grade.  Back to the research I went, the communication across the team of doctors & many eye appointments later, Charlotte is doing well & celebrating one year being flare free!

For 6 years, I have raised funds & awareness for a non-profit called CARRA: Childhood Arthritis & Rheumatology Research.  I believe in CARRA because every dollar donated goes to research. Research that 6 years ago, I wish would have been available to know for certain which path to take for Charlotte.

I've organized:
  • the CARRA Costume ball (2 years @ CHS & @PHE)
  • the Walk for CARRA (@PHE)
  • & for the past two years, I've had a Shop for CARRA event in my home.  

We've participated every year, in other CARRA fundraisers in Portland:  the Race for CARRA &  the Hayhurst Triathlon!  And you might have seen little girls wearing big flowered headbands at school & at football games.  That's because for 6 years I have made & sold Tottie's Pretties headbands where I donate profits to CARRA.
Tottie's Pretties headbands at a Camas fundraising event coordinated by Ann Matthews
Shopping for CARRA last year
CARRA now has a committee that is solely dedicated to arthritis induced uveitis. 

I was asked to be a part of the CARRA uveitis committee with Doctors from across the nation, to be the voice of the parent with a child with uveitis.  

The committee has been working for a year now, meeting via conference calls once a month, creating a protocol for doctors to follow for their uveitis patients.

My fact-finding knowledge on Charlotte's condition, and my determination to fund research is work that I am devoted to and passionate about.  It's why Friends of CARRA leaders asked for my participation & it's the same drive & conviction I have to represent every student in the Camas School District.

I hope to join the CSD School Board of Directors on November 5th & you can count on the same persistence & dedication to every decision I make on behalf of the families in our community.


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