Sunday, March 20, 2011

More Than Just Hope

A couple of weeks ago, Jennifer posted a bit I had written about the Creating Hope Act. I wanted to follow-up on that with a little more context.

In a nutshell, the Creating Hope Act is a piece of legislation that seeks to create incentives for the big drug discovery companies (like Pfizer) to create drugs for rare diseases that affect children. Finley’s LCA would qualify as one of these diseases. As we said from the moment we (with our other wonderful RDH12 families) created the RDH12 Fund for Sight, a cure for LCA is possible. The only reason it hasn’t happened is because there is no profit in treating a disease that only affects 85 or so people in the United States. The was no motivation for those that could produce it. The Creating Hope Act takes some small but important steps in the direction of changing that. By rewarding companies for taking on these rare diseases, we might just start to see cures not just for LCA but for Tourette’s, Adrenoleukodystrophy, childhood cancers, and other diseases of the sort. But that is only if the Creating Hope Act is passed.

And that is where anyone reading this post comes in. The Creating Hope Act was first introduced last year but the congressional session expired before it even got out of committee. The Act was reintroduced this year and it again sits in the Senate’s Health, Education, Labor and Pensions Committee. We, of course, can’t march down to Washington and force them vote on this legislation but we can at least let our Senators and Representatives know that we want them to make this reform happen. For my part, I wrote to each of the sponsors of the Act to thank them for bringing forward this important piece of legislation. I wrote my state Senators asking them to support it. I wrote to the members of the Senate’s Health, Education, Labor and Pensions Committee to ask them to expedite the review of the Act as time is of the essence for children like Finley (she probably only has ten years tops worth of usable vision). And I wrote to my local Representative asking him to put forward similar legislation in the House of Representatives. I have listed all of these people below. Now all we can do is ask others to do the same. We only have power in numbers. Unless our Senators and Representatives hear the same message from multiple members of their constituency, this cause will likely not register on their radar.

Most people who read this blog have already been so generous with fund raising and donations for the RDH12 Fund for Sight. Here is a chance to do one more thing for the cause that won’t cost you a thing (not even a stamp – It’s all digital baby). Thanks again.

Oh, and how cool was it that LCA was featured on "Bones"?

Find your local Senator and Representative

Sponsors of the Creating Hope Act
Senator Casey (D-Pennsylvania)
Senator Brownback (R-Kansas) - sponsored the legislation in 2010, now Governor of Kansas
Senator Brown (D-Ohio)
Senator Brown (R-Massachusetts)
Senator Franken (D-Minnesota)
Senator Isakson (R-Georgia)

Members of the Health, Education, Labor and Pensions Committee
Senator Alexander (R-Tennessee)
Senator Bennet (D-Colorado)
Senator Bingaman (D-New Mexico)
Senator Blumenthal (D-Connecticut)
Senator Burr (R-North Carolina)
Senator Casey (D-Pennsylvania)
Senator Coburn (R-Oklahoma)
Senator Enzi (R-Wyoming)
Senator Franken (D-Minnesota)
Senator Hagan (D-North Carolina)
Senator Harkin (D-Iowa)
Senator Hatch (R-Utah)
Senator Isakson (R-Georgia)
Senator Kirk (R-Illinois)
Senator McCain (R-Arizona)
Senator Merkley (D-Oregon)
Senator Mikulski (D-Maryland)
Senator Murkowski (R-Alaska)
Senator Murray (D-Washington)
Senator Paul (R-Kentucky)
Senator Roberts (R-Kansas)
Senator Sanders (I-Vermont)
Senator Whitehouse (D-Rhode Island)

Connecticut Senators
Senator Lieberman (I-Connecticut)
Senator Blumenthal (D-Connecticut)

Local Representative
Representative Courtney (D-Connecticut)

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