Mixed Nuts: More Than Just Hope

Quotes

"There is no better way to thank God for your sight than by giving a helping hand to someone in the dark." - Helen Keller
When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." ~Erma Bombeck
You may never know how strong you are, until being strong is your only choice.- Unknown
Keep your face to the sunshine and you cannot see a shadow' ~Helen Keller
Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.
Don't cry because it's over, smile because it happened."- Dr. Seuss
"Life is 10% what happens to you, and 90% how you react to it."
"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."Author Unknown
I have been driven many times to my knees by the overwhelming conviction that I had nowhere else to go – Abraham Lincoln
Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man. ~ Benjamin Franklin
There are only two ways to live your life. One is as though nothing is a miracle. The other is as if everything is a miracle - Albert Einstein
The journey of a 1000 miles starts with a single step
Sometimes in the middle of an ordinary life, love gives you a fairy tale
Where there is great love, there are always miracles - Willa Cather
The Difficult we can do immediately, the impossible takes a little longer
Doing what you like is freedom. Liking what you do is happiness
There are two lasting bequests we can give our children. One is roots. The other is wings.
Be the change you want to see in the world
Don't tell God how big the storm is, tell the storm how big Your God is..........
Everything has beauty, but not everyone sees it
Fall down seven times - get up eight - unknown
Despite our differences, we sink or swim together
Life may not be the party we expected, but while we are here, we might as well dance
"The man who moves a mountain begins by carrying away small stones." -Confucius

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"?