Up and coming

Today, my friend Maria and I spent many hours getting things ready for a tag sale that is happening in our town in a few weeks.  It was great to get it done.  Many people have donated kids clothing and items to us for this sale to sell. All proceeds will be going to our RDH12 Fund for Sight.  We are excited to have a chance to do our first fundraiser here in Massachusetts and start to get our name out there in the community.

Braille shirts are in full swing - don't forget to order yours.  If you have any questions - just email me, or leave me a comment on the blog.  Someone told me today that they would like me to make it into a framed art for them - the braille.  What a great idea!  So - I can do that for you as well.  The ideas are endless.

Today I was sent an article that was in the Pittsburgh Post gazette about a movie called "Going Blind".  If you would like to read the article, go to:  http://www.post-gazette.com/pg/11276/1178981-114-0.stm  (just click on the link and it will take you there).  I wrote to the gentleman who wrote the article thanking him for writing about people who are going blind and told him about Finley and our foundation.  Hopefully we will hear from him, but in the very least he knows about LCA.

The movie looks good.  You can download it and watch it on your computer from Amazon for $1.99.  If you go to the actual movie sight which is: http://www.goingblindmovie.com/ (just click on the link) you can read more about it, watch a clip, and it will show you how to download the movie to watch.

BUT - more important than all of that (because learning about people who are going blind is very important) is that LCA was not mentioned in the movie.  Most of the people who are in it, are older folks who have lived their life and are going blind.  Not that it doesn't make it sad.  It does.  We don't want to see anyone lose their sight.  And I can't imagine how hard it would be as an adult to lose my sight.

BUT - LCA is the worst form of childhood blindness and it is not mentioned.  While the numbers of Finley's particular type of LCa are small, LCA itself affects 1000's of children.  1000's of children who are losing their sight due to this terrible disorder.  Children who have no chance of growing up seeing their parents, their friends, or anything else we as a sighted community take for granted.

If LCA continues to be in the background instead of the forefront of blind awareness, what real hope do our children have of being cured?  We have said many times - we can raise all the money in the world, but in the end - the FDA and the big funders have the final say.  LCA cannot be left out of movies like this, or articles about blindness, or books about blindness.  Our stories need to be told so that the people who MATTER know we are here.  Know what we want and what we are fighting for.

So - I asks this of my readers.  I ask you to go to http://www.goingblindmovie.com/ and click on the button that says "contact".  I would like you to email the people at this movie and tell them about Finley.  Tell them about someone in your life who has LCA.  Tell them what it means to you and what it means to the families who are fighting to save their children's sight.  Tell them how important it is that LCA's story be told.  That the families who are affected by LCA are fighting so hard and that we are nearly there.  That we have formed foundations, and non-profits, and raised thousands upon thousands of dollars to cure our children.  It is just right out of our reach.  It is that dangling carrot to our family - we can see it, but we just can't quite reach it.

So please - tell them about Finley.  Tell them about your children with LCA.  Tell them how important it is to have our story included the next time they want to tell a story about going blind.