Nystagmus Walk

If you follow our blog on facebook, you may have heard me mention the upcoming Nystagmus Walk a few times.  But, in case you haven't, or if you want more information, here I go again!

In April 2013, the very first Nystagmus Walk will be held in Nashville, Tennessee.  The goal of the walk is to raise money for the American Nystagmus Network, as well as raise awareness for what is a fairly common (1 in 1,000) visual impairment.

The Walk's organizer pointed out that "nystagmus" is recognized as a misspelled word in Microvsoft Word and Google.  She would like to see that changed and to raise money for research.  Some of the things that I hope raising awareness will do are:

• Make all ophthalmologists familiar with the condition, and it's possible causes and treatments.  
• I would like for pediatricians to know enough about nystagmus that they never tell another mom nystagmus means that their child is probably blind.
• I want doctors to not assume that because a child is fair and blond, that the nystagmus is because of albinism
• I want people with nystagmus to be able to get treatment in their own community without having to travel.
• I want to know that Makayla will not be made fun of in school, because kids will already know what nystagmus is.

Some of these goals are very ambitious, and may take more than one walk to accomplish, but I am so grateful to the Walk's organizer and all her hard work.  I am really optimistic about all that this walk could accomplish and what it may mean for my little girl one day!

The Nystagmus Walk has a facebook page.  Please make sure that you visit the page and "like" it to get all the important updates!  They are also currently working on a project where they need pictures of eyes.  If you or someone in your family has Nystagmus, please take a photo of your eye, and one for each person in your family and email the pictures to nystagmus.eyes@yahoo.com to be included in the project!