Saturday, February 19, 2011

Help from our Friends and Family

This is a post by Mat!!

Dear Friends and Family,

We can not thank you enough for all the support you have shown our family and our drive to develop a cure for LCA.  We were hoping you might be able help us again.  The Senate is currently debating a piece of bipartisan legislation called the Creating Hope Act that will create financial incentives for drug companies to produce cures for diseases like LCA.  This is essential.  Only the major drug companies have the infrastructure and resources necessary to fully develop and distribute therapies to a broad population.  Unfortunately, in the current system it is not fiscally responsible for these publicly traded companies to apply those resources to diseases like LCA that effect so few people.  This legislation helps to change that.  I have attached a paper that describes what the Creating Hope Act is doing in more detail if you are interested in learning more.  What we were hoping was that you might contact your local Senators and Representative and let them know that you want this legislation passed.  I am also attaching a sample letter that you could use when writing your Senator or Congressperson if you like.  Or use your own words.  You can find your Senators' or Congressperson's contact information at  With enough vocal support for this Act, we might just see it get passed in a timely fashion and take one more step towards helping Finley keep her sight.

Here is a letter you can send - you just have to fill in the name of your senator and sign!  Just copy and paste this letter to your own word document and send it off.  We made it that easy!

Dear Senator/Representative __________,

I am writing you, as your constituent, to ask you to support the Creating Hope Act,
currently under consideration in the Senate Health, Education, Labor and Pensions Committee.
This legislation seeks to extend benefits to drug companies that develop new therapies for rare
and neglected childhood diseases. Unfortunately, I have a firsthand appreciation for the
desperate need for this legislation. I know a little 4-year old girl by the name of Finley Pletcher
who was born with a rare genetic disease called Leber’s Congenital Amaurosis. It is causing her
to slowly lose her sight. Before she enters college, she will be blind. There is currently no
treatment for her and her disease. But that does not mean her condition is not curable. In fact,
given new technologies like gene therapy and our current understanding of the disease, it is very
likely that her vision could be saved. Yet, with Finley’s version of Leber’s Congenital
Amaurosis being so rare (there are about 85 others in the United States that share her version of
the disease), there is little economic motive for any company in the business of making
medicines to generate this very achievable cure. The Creating Hope Act puts in place stimuli
that could convince pharmaceutical companies that it is their balance sheet’s and shareholders’
best interests to give these rare genetic diseases significant attention. I ask that you do all that
you can to help get this legislation out of committee and passed into law soon so that the cures
that are possible can finally be delivered to the children that need them.



If you want to read the "Creating Hope" act, please let me know.  It is 4 pages long - too long to put on our blog.  But hopefully soon we can add this link to our RDH12 Fund for Sight website or Finley's Fighters website.

Thanks for your support!

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