Monday, January 14, 2013

Rare Disease Day

This year, February 28th will be Rare Disease Day.

Mat plans on going back to Washington DC to meet with legislators about Finley and about other kids with RDH12 LCA.

I know all of my lovely readers know how rare Finley's disease is.  With less than 100 people affected with RDH12 LCA, money isn't flowing in from all angles to cure our girl.

We fight every day for awareness for Rare Diseases.  We want to make awareness for RDH12 LCA so great that it becomes a household name!

Well......we wish.  We want you to tell someone who tells someone who tells someone.  You never know who may be listening.

In 2 1/2 years we have raised closed to 1 million dollars for RDH12 research.  But it isn't enough.  It isn't the only thing that matters.

While we work hard on the cure, we work equally as hard on the awareness.

So visit the Rare Disease Day blog and learn!  Knowledge is power and knowledge will lead to a cure for our girl and kids just like her.


1 comment:

Anonymous said...

Rare diseases are very important to spread thier word so others may learn more about them and stand up for their causes, especially an eye disease RDH12 LCA. Thank you for letting folks know about rare disease day and about your sweet Daughter Finley.

shayla m.