I’m getting really pumped about the American Nystagmus Conference in Washington D.C. I can ‘t believe it’s only a couple of weeks away. Time has gone by so quickly!
There are two reasons why I am especially excited…
I officially have ANN permission to blog live while I’m at the conference. This means I can post pictures, videos, and talk about what’s going on at the conference while it is all happening. I hope that all of you will one day be able to attend an ANN conference, but for those of you who can’t make it this year, do not fear! I’ll try to document as much as I can so you can at least experience a little bit of it. I only wish I could attend all of the panels and discussions they have set up. It all looks pretty amazing…
The other reason I am very excited is that I will be participating at the conference! I have been asked to moderate a panel of young people who have successfully navigated their way through life with Nystagmus. Sound familiar? Those are my kind of people! It’s a big honor to be asked to lead this discussion, and I am really excited to sit down with everyone and open a window into what it is like for a young person with Nystagmus. I think a lot of parents with young children who have Nystagmus will find this panel particularly informative. One of my goals at the panel (and with this blog) is to hopefully alleviate some of the fears that parents have when their child is diagnosed.
I think one of the biggest things I’m looking forward to at the conference is just to meet other people with nystagmus face to face. I have made a lot of shifty-eyed friends over the internet who I wouldn’t trade for the world, but I have yet come in to physical contact with someone who has the same condition as me. It’s funny, in some ways the role will be reversed for me. I’m so used to seeing other people react to my Nystagmus that I’ve never really given any thought to what my reaction would be. I have heard that it can be pretty emotional. I guess we’ll see 🙂
To all my shifty-eyed friends, let me know if you are coming to the conference! Can’t wait to meet you! And if you won’t be able to make it this year, let me know what parts you would be interested in. I’ll have to be your eyes this time. Ha, that will be a first!
That’s brilliant. I hope you have a great time at the conference. We are looking forward to attending our first UK Nystagmus Network Open Day on 22nd October. Look forward to hearing how you get on 🙂
Hi. I’m looking forward to your feedback from the conference, especially as I’m a Mom with a 3 year old daughter who has CN, I’m always trying to find information on how to help my daughter so that her life is as ‘normal’ as possible, she is an amazing little girl who many times seems to find her own way around problems. Thank you in advance. Have fun. Maureen W.
so cool Jo- So proud of you!
This is my first visit to your site. It is refreshing and encouraging to read the blog. I have CN. This being my first blog I would like to keep it short 🙂 There is power in knowledge. Let’s make it our responsibility to educate others . Like cancer or HIV has shown us. We are afraid of what we don’t understand. Let us as fellow Nystagmites educate others . We can gain support and one day a cure ! Attending the ANN conference and becoming a member are two ways to start! Nystagmites, DON’T BE DISCOURAGED
Wow! A shifty eye blog! i just discovered you and will now read all your posts but for now i just want to say that I can so identify with watching other people react to my nystagmus. I know EXACTLY the moment people notice.
I haven’t met anyone else with Nystagmus either. I did however become oddly fascinated with watching myself in “Photo Booth” when I bought my lap top because finally I could see what my eyes got up to.
I’m so glad I found your blog. I have always felt I am the only one in the world with this problem. To hear from others really helps me feel not so alone. My case seems worse than yours. I get headaches and my vision is very poor and I tend to see things swaying when I’m tired and find myself getting dizzy a lot.