I think we are all terrified by the economic news. Terrified for our own families but it is more than that.. the economy can slow our progress to endDuchenne.
Today we know more about care than ever before. Research is moving rapidly ... and it is on a certain level. I know it doesn't feel that way when you tuck your son into bed at night and pray for trials, treatment, cure. In 2009 we will see many more clinical trials - antisense, approved drugs, idebenone and others. We are in a new era in DMD. Our sons are expected to grow up, have careers, make life choices.... the important words being LIVE to become adults.
While the economy is a major threat to all of us, it is also a major threat to progress. Fundraising is time consuming, difficult and tedious for sure, but now, more than ever we need to be thoughtful and creative. I like the idea of 'painless giving' , reaching out to large numbers of people for small amounts of money. We simply cannot afford to lose the momentum.
By working together we were able advocate for our sons. Congress responded and re-authorized the Paul D. Wellstone MD CARE Act. The President signed it into law on October 8, now known as Public Law 110-361. And it is important to understand our success - against all odds. Here are the statistics on legislative measures introduced and signed into law for this, the 110th Congress.
In the House - 9,302 Bills introduced
In the Senate 4,501 Bills Introduced
ENACTED 449 or 3.2%
OF the 449 enacted, only 24 are health related.
It is pretty amazing when you look at these statistics. I think it is a reflection of our strength, our commitment and our love for our boys.
Our sons cannot wait until the economy improves.