Monday, August 9, 2010

2010 JA Conference Notes - Advocacy

Advocacy is a huge part of how the AF directs money to research. Congress appropriates millions of dollars each year to disease research and we have to do our part to get our share. However, congress won’t listen to the foundation, we don’t have enough money to pad their election campaigns and the foundation isn’t a constituent. This is where you come in, we need your help to influence your congress person. They will listen to their constituents and if we all let them know this is important our voice will be heard. Sign up to become and e-advocate and get alerts when we need your help!

Advocacy has helped to create a loan repayment plan for docs that become pediatric rheumatologists. However, it’s not funded so we still need to keep the pressure up. Our other goals are to create a registry of kids with JIA to facilitate research. We also need to fund research to discover the answers to questions:
What are the long term affects of the meds we are on?
What is the best treatment plan?
When can we reduce medications?
When should we not treat at all?
Can we find a cure?
What are the best combo’s of drugs?
Should we treat it hard early or slowly?

The advocacy program helped the CARRA database secure short term funding from the NIH, we are working on longer term funding.
CARRA - Database of kids with JIA. It is totally confidential. This database of information is used to facilitate studies of the JIA disease.

To become an advocate please go here:

No comments:

Post a Comment