NOAH AOC

I just wanted to say thank you to everybody for their support and encouragement.  I am still hurting but at least now I know that Jathan is going to be ok and that is so important.  You guys are simply amazing!  I really enjoyed meeting everybody and putting faces to the people online

Vickie,

I feel bad that I didn't run into you until the last day!  I enjoyed meeting everyone and putting moms and dads faces to the faces of our little ones!  Vickie, I know what you are going through and I hope seeing everyone at the conference made you feel that Jathan will be okay.  To me, it was amazing hearing about jobs adults with albinism have and seeing teenagers so comfortable with who they are.  The fear of the unknown is so scary but I feel like a got a look into Ryker's future this past weekend and it was a very bright future. It really was an amazing experience!

Kelli

Yes, I wish I would have ran into you sooner as well.  But at least we did meet and I got to see your beautiful son.  It was such a huge relief for me to see these children and adults.  They were all doing so wonderfully.  I am not sure if you mad it to see the presentation done by Brian Evans or not, but I think that the one that helped me the most.  It was so awesome.  He changed the pixels on pictures to give us some sort of ideal what a person with 20/100, 20/200, 20/300 and 20/400 sees.  To be honest even the 20/400 wasn't nearly as horrible as I imagined it would be.  I wouldn't wish it on anybody, but I invisioned it to be horrible.  Then I realized after watching his presentation that it could be much worse. 

Vicki-

 First off, it was great to meet you...your son is gorgeous....he really reminded me of my son at that age...he looked so much like him it was weird (in a good way) :)

As scarey as it may be, atleast your son was diagnosed early and you will have all early help you can possibly handle...unfortunately my little man wasn't diagnosed til he was 2....so really feel behind in so much for him.  I learned soooooo much this weekend and I can't wait to be able to try and digest it all and explain it to his teachers and try to help him be successful in everything he does and wishes to do.

 Again, congratulations on your gorgeous son....enjoy every minute!  See you in DC

Samantha,

Awwh! Thanks so much.  Your children are beautiful as well.  Yes, I am glad that my son was diagnosed at birth.  I really enjoyed learning everything. And for those of you that didn't know about 6 of the sessions were taped and can be purchased throgh NOAH.  I have all ready purchased all of them b/c I am sure that I missed so much as I was on major information overload plus my husband was not able to attend due to finances and that way he can see it as well.

Thanks Again,

Vickie

Oh, Vickie!  I'm so glad Brian did that presentation!  He presented at the conference in 2006 and it was SO helpful to see what different acuities "look" like through pictures.  That really helped me understand Zachary's vision better.  Isn't Brian a riot?!  He always makes me laugh.  I am just so happy that all of you newer families decided to make the trip - it's so invaluable.  I can't wait to meet you all in Washington, D.C.!

This was our first conference as well. It was great meeting new people and just being in the same room with folks who didn't ask my son Matthew why he was reading so close or wearing a hat! My son and I really learned a LOT and hope to attend the DC conference too.

I know what you mean by being comfortable and not having to explain your son's hair color, eye movement, and the like to people.  It was so nice just to know that all these people understand albinism and what we are going through.  I try to explain that to people when they ask about our trip and no one really gets it.  Can't wait for DC!

Kelli

 Vicky,

I actually have a PDF file of Dr. Brian Evan's presentation posted on Lyra's website under How Lyra Sees . 
This is his short version, but he told me I could get an updated file with the longer version he presented at the NOAH conference.  Hopefully I'll get that soon.  :) I agree it really helped, seeing it.  It helped me realize her vision really wasn't THAT BAD.  It also helped me explain to family members how Lyra sees.  

Mashawna

Brittany, I am so glad that he did it too.  It helped me more than anything else ever could have.  I know now that even though its going to be a hard road it will be ok.

Thanks Mashawana,

I have printed it out and will show it to my husband when he gets home.  It was so nice to meet you and your husband and your beautiful little girly (Lyra).

I cannot wait to see everybody again

I heard that several of the presentation powerpoints would be put on NOAH for us....has anyone else heard this or know if it will happen??

Thanks

Samantha

I know that Dr. Brian Evans said he was going to post his when I asked him at the conference.  Also, 6 of the sessions are available for purchase through NOAH.

I did see the dvd's for sale but unfortunately the the cost of going to the conference has really strapped me for the next couple of months (espeically with 3 of my 4 kids starting school, college books for myself and so on) so I will have to wait to get the DVD's for awhile.  I am trying to put together as much information as I can so that I can try to get a meeting set up with both of my sons headstart teachers, the head of his daycare and his 6 IEP teachers and an eye specialist so that I can speak to all of them at the same time instead of each individually....so any and all information would be awesome.  I did buy the picture and the book at the conference.

Thanks again to everyone