Life with Ella and Emerson

This is a blog dedicated to my beautiful daughters, Ella and Emerson. Emerson was diagnosed with a rare, genetic disorder called Williams Syndrome when she was 5 months old.

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Location: Wisconsin, United States

Wednesday, September 17, 2008

Help?

We are in the midst of planning our second annual "WS Awareness Event" to raise money for WS research and Dr. Bonnie Klein-Tasman from UW-Milwaukee. Last year, we raised almost $10,000!! Dr. Klein-Tasman is such a great resource and is really devoted to helping families with the dual diagnosis of WS and Autism. As we know, these are often the families in greatest need of answers and support. Dr. Klein-Tasman told me that this donation last year helped keep her lab focused on Williams Syndrome. She has many graduate and undergraduate students from all over the country that she is training and she can really help increase the pool of experts in the field. Anyway, here is what I am asking:
1) I wanted to do a "Faces of Williams Syndrome" slideshow similar to what Laura (Michaela's mom) did recently. If you could send me via e-mail (nbeaumier@yahoo.com) a recent picture or two of your child that would be great.
2) Also, I thought it would be really cute to have lying on the tables at the benefit a picture of your child along with their first name, age, age of diagnosis, and then a blurb about them. This can be as much or as little as you would like. It could be a snapshot of their personality and/or in depth what it means for them to have WS. Make it whatever you have time for. I just thought this would really tug at some heartstrings and also some pocket books. :)

Thanks in advance and check out our website at www.williamssyndromeawareness.com

8 Comments:

Blogger Tara said...

I'll get some pics sent your way!!

2:14 PM  
Blogger Heather said...

very awesome! With Caleb not being dx'd until 9, I am all about awareness!!! I will send you a cute pic from my blog of a recent picnic and a short write up. thanks for all you're doing Nicole :)
Heather

3:00 PM  
Blogger Julie said...

I'll send you some stuff. Good luck.

6:29 PM  
Blogger Julie said...

I don't have your e-mail. Mine is jshoofly@atlanticbb.net.

7:04 AM  
Blogger Tes said...

what a wonderful idea. I will send some of Lila. Also i just love that head of hair on your beautiful girl!

11:56 AM  
Blogger Laura said...

I will happily send along some picture!

4:36 AM  
Blogger Ava Jewel Leilani said...

This is wonderful, thank you for all you have and are doing!!! I'll send some pics as well.

1:18 AM  
Blogger Gina said...

Thanks, Nicole. You are awesome. I just sent pics of Gianna.

5:46 AM  

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