Tuesday, February 28, 2012

okay okay

I am going to have to keep posting things about Rare Disease day - which is tomorrow, THEN I can post pictures again!

Mat had his meetings with the house and senate today and was very pleased with how they went.  He will write a blog post when he returns to talk about all that he learned and what next steps will be to keep the information alive in local senators minds.

Tomorrow - remember Finley.  If you have a red Finley's Fighters wristband, a braille shirt, a Finley's Fighters shirt, something red - where it in honor of our girl.  Take her picture to your job - share her story with your co-workers and your friends.  Help us spread the awareness of LCA and our quest for a cure.

I would like to share some links with you to go to tomorrow:

Click on "handprints on the hill" up above and it will take you to a site explaining it.  Tomorrow I will link you to NORD (National Organization of Rare Disorders) where you can put your "handprint".

Click on "NORD" above and you can read all about ways you can spread the word about rare diseases in honor of Finley

Click on "NIH videocasting" to watch videos TOMORROW (Wednesday) of people speaking to NIH about rare diseases.  Maybe we will see MAT!  I think it will be on all day.

Spread awareness about LCA for us.  Tell them Finley's story.  Someone out there will listen and they will tell someone else, who will tell someone else.  The best thing we can do is raise awareness and with awareness comes cures!

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