We cannot let the economy slow our progress.

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
TOTAL 13,803

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.

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Comment by MarcosDad on January 9, 2009 at 9:14am
Keeping the PPMD movement alive is important. The best thing I did was join S.T.I.R. Donating these days is very difficult (believe me I'm in NY and our state government loves to tax and spend money even during these horrible econmic downturns). With S.T.I.R. it is easy, you don't miss it because it becomes a normal expenditure. It is not like signing a large check for the year to donate but a small monthly automatic withdrawal. You feel great doing it and it doesn't hurt. You can do a number of denominations per month. I found ways to cut expenses on a monthly basis to make it possible (easier than trying to find a lump sum). I go out to eat less per month, etc... If you are like me and you want it made easy then join S.T.I.R...

Comment by Jacobs Mommom on December 8, 2008 at 10:54am
I couldn't agree more Pat and that's why I think that the collection cans are so great! I've been received well by the WaWa Store in front of where I work and they want a can at each register so I'm taking the rest today. I've placed them in my hairdressers, the pizza parlor that I frequent, the jeweler that I frequent and the party store that I frequent and plan to hit some more stores as well. Plus, others in my family and friends have asked for the cans so they can place them in their frequented places. I hope that the money starts to roll in, in a few weeks.

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