Welcome!

I'm not new to talking, sharing ideas, or stating my opinion, especially stating my opinion! After all, I taught elementary school for 30 years! However, my audience has typically been smaller,just family, the classroom, or just talking to myself!

My blog has two goals: be an outlet for sharing thoughts on writing children's books and the path to publication (got my fingers crossed that I'll get there) and a place to chronicle my journey of losing my sight. Sometimes I imagine these two paths will overlap .


Tuesday, February 28, 2012


          A Rare Opportunity

February 29th is a rare day. We only see it once every four years. So it's the perfect day to observe Rare Disease Day.


All around the world, there will be events and projects  introduced to increase awareness of diseases that don't always make the news, that may not have a huge marketing organization. You might not realize that the following are considered "rare" :
       * Cystic Fibrosis
       * Huntington's Disease
       * Gauchers Disease
       * Spina Bifida
       * Ushers Syndrome
and my "favorite" one, Retinitis Pigmentosa (RP)

Did you know:
 According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting around 30 million Americans (about 1 in 10 people).  Also, less than 5% of these diseases have any type of treatment options and none of the 7,000 have a cure. Yet.


One in 10 people in the United States suffers with a rare disease. That makes it seem not so rare, doesn't it? It also makes you realize that you probably know a half dozen folks dealing with a rare disease!

 "Solidarity" is the 2012 theme and it focuses on the importance and the need for collaboration as well as mutual support in the field of rare diseases. 

In solidarity with me, a member of the rare-disease-club, check out this site  or go to this site  and click on the Raise Your Hand Campaign button. Each click = a $1.00 donation by Lundbeck Pharmaceuticals that goes toward research for rare diseases. (They're contributing up to $10,000 so click away!)

Happy Leap Day everyone. Please take a leap of faith and help out the millions of Americans who are hoping for treatment options and cures. Like me.        

                                                                     

1 comment:

  1. Great post, Gail--and you really opened my eyes with that 1 in 10 statistic. Here's to raising funds and awareness for all those rare diseases--including yours.

    ReplyDelete