My sister in law - Tricia - sent our video we made to Ellen Degeneres show, and said that they would like to see more people send in request. If you feel our video would be good on Ellen's show, will you let her show know? Click on the word "ellen" below and it will take you where you need to go.
Just go to that link above and fill it out. It only takes a few minutes, but we could get a lot of money for our foundation if we were ever chosen. We appreciate it! The name of our video on YouTube is: RDH12 Lebers Congenital Amaurosis - The story of Finley. Include that somewhere in the "tell us your story" part. Thank you!
February 29th is Rare Disease Day in Washington DC. Mat will be going down as a parent for one day and as a Pfizer rep. for another. He will be taking Finley's picture, our story, our foundation's information. He will have a chance to talk to congress, and a chance to talk to the National Institute of Health as well. We are excited for the opportunity. Many LCA families are going. The Global Genes Project and the R.A.R.E. project (that did the book contest) will be there as well. Rare diseases is going to be well represented and I can't wait to hear all of the details.
Here is the picture my friend Jennifer Stevens made for us to take with us
Tomorrow I will begin to post pictures from Arlington in NYC and our Dining in the Dark. The Dining in the dark experience made $2190 for our foundation this weekend. Thank you again to everyone who came to the experience, to the Orlando's - Larry and Marge who helped endlessly over the weekend to make sure we pulled it off, and to Mary Louise Hornick who made the beautiful baskets for the raffles, and gave us flowers for the tables, and made the incredible salad. We couldn't do it without them!
1 comment:
Hi there, I was trying to go to the link to the Ellen show and it said it was broken! Let us know when it's fixed so we can go on over :)
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