Hi Debbie K Thanks for all your efforts toward organizing last Saturday's picnic. In my opinion it was a great success - even the weather cooperated. I enjoyed...
I'm so sorry I was so late and didn't get more of a chance to chat with more of you. Taxis in Overland Park are, well, a hassle. But, I'm glad I at least made...
I had a lot of fun. We all did! I agree, it was a success. [:)] We should set a date for next year. How 'bout Saturday, June 6th? I added a few pictures...
I think we had a great first annual picnic. I have set aside 6/6/2009 as our 2nd Annual Picnic day. All details are up in the air and we have plenty of time....
Hello! I just noticed that someone new joined and since I wasn't sure if this was someone we met at the picnic or not - just thought I'd say hello! (I was late...
Hello Heather, Â You probably know me from AI. I am Nikki, Michael's mother. For others who don't know me I have two kids Michael who is going to be 13 in...
Oh yes Nikki, I remember you! Heather Kirkwood Director of Outreach, Vice President Hermansky-Pudlak Syndrome Network One South Road Oyster Bay, NY 11771 1...
Just wondering how NOAH went for those that were able to go? Did you get a lot out of it? Did you feel it was worth the effort to get there? What was your...
It was a good conference. As a first time attendee with a child, it was a great experience to see the kids playing together and the adults having such a great...
I agree, not the most kid friendly location. Meeting everyone was absolutely the BEST! I learned a lot from the sessions, but I kind of have information...
That's really neat. As a kid I never met any other kids with albinism growing up except my brother, of course. I went to a camp for VI kids when I was 10 and...
I'll have to "officially" join then so I can vote for you! Heather Kirkwood Director of Outreach, Vice President Hermansky-Pudlak Syndrome Network One South...
Hi, My name is Brigid Mayer. We just moved to Olathe, KS. I have a son, Eben, who is 4. My daughter, Noa, is 19 months old and has albinism. My husband,...
Hi Brigid, I responded to your post on the NOAH forum also, regarding a pediatrician and pediatric ophthalmologist. My daughter Lyra turned 2 in May. She is...
Orchestra teachers! How cool. Mark is taking Suzuki violin. You must take your kids to Deanna Rose <http://www.opkansas.org/_Vis/Farmstead/index.cfm> . It...
Hello Brigid, My name is Heather and I'm an adult with the HPS 1 type of albinism. Welcome to the area!!! I work as an editor for a trade magazine. Â There's...
Hello Brigid, nice to meet you. My name is Nikki and I am a mother of two. Michael who is almost 13 ( next month I just can't believe it ) and has OCA1a. Then...
I took my kids there once along time ago it was awsome we loved it. There was one point that got a little stressfull for Michael at one point because even...
The Shriner's circus is coming in Nov. as well. I have a few friends who are Shriner's and was able to get floor tickets for my two boys. Shriner's happens to...
Okay, pardon the intrusion - I'm a proud sister and I feel like shouting from the rooftops! My brother Ryan, who also has HPS albinism, is getting married!...
Touch-A-Truck is sponsored by Blue Valley Parks and Rec www.bluevalleyrec.org. It is cheap and the kids get to get in the vehicles and touch them all over....
Hello Tiara, and welcome to the group. We mostly use the group to stay in touch about events or plan.... Congrads on your new baby! My name is Heather. I am 35...
Thanks for the nice welcome. We are so excited that there is a group so close to us. We are looking forward to attending our first event and meeting...
I am often meeting people that may be interested in joining our group. The subscription string is not something I want to our can memorize. So, I made these...
A while back I posted a photo on my blog of two fawns with albinism. I thought they were beautiful, but I didn't know who took the photo. The photographer...
For several years I used to volunteer every weekend for a program in Kansas City called Adventure Fitness. It was for elementary through high school kids with...
I just thought I would let you know that in the summer time my son Michael is home from the Missouri School for the Blind and I was going to ask him if he...
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