PKS KIDS

A Forum For Those Touched By Pallister-Killian Syndrome

This is a public forum for those impacted by Pallister-Killian Syndrome. Please also visit our non-profit organization's site at www.pkskids.net

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Notes

A thank you from CHoP

In May PKS Kids made a donation to CHoP to assist with research of Pallister-Killian Syndrome.

Dear Mrs. Hettiger,
This is tremendous!  Thanks so much for your generosity and emphasizing PKS Kids' commitment to research!  These funds will be put to direct use in our project to identify the exact genes that are dysregulated (turned up or down) in kids with PKS as a result of the extra chromosome 12 material as well as to help establish a comprehensive c

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Created by Gretchen & Simon Sep 28, 2009 at 11:43am. Last updated by Gretchen & Simon Oct 27.

 

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Forum

Camilla/Lauren

fundraising 3 Replies

Started by Camilla/Lauren in Untitled Category. Last reply by Kelsey/ cammie Oct 29.

Kate

Child Neurology Society conference update 1 Reply

Started by Kate in Untitled Category. Last reply by Gretchen & Simon Oct 18.

Kate

Magic Bullet mini blender 23 Replies

Started by Kate in Untitled Category. Last reply by Gretchen & Simon Oct 19.

Latest Activity

Sandra, we so understand what you mean! There may be more to come on this in the next few weeks. We'll let you know. :)
3 hours ago
3 hours ago
5 hours ago
on Friday

Blog Posts

Abbey, Brayden, Cory Depoorter

Please Vote and tell everyone!!!! Thanks

my mom got flesh eating bacteria and lost her right dominate arm. She came through what many would say is a miracle. Some of her co-workers have nominated her for a cruise through a local radio station. On Friday, Nov. 6th whoever gets the most votes will win a cruise. For all that she has endured this year. You can vote for her at http://knws.nwc.edu/page.php You can only vote for her this coming Friday afternoon

Posted by Abbey, Brayden, Cory Depoorter on November 4, 2009 at 3:44pm

Gretchen & Simon

Cookbooks

Just a little update on our cookbook sales. We started off with 1000 cookbooks and are down to just about 125. This is phenomenal!

A special thanks to Nic and Terzita down under who sold 396 COOKBOOKS for PKS Kids!

This fundraiser was a huge success and we hope to do it again. I'm already picking out recipes :)

If you need some cookbooks sent to you to sell, please contact me at gpeters@pkskids.net.

Thank you!
Gretchen

Posted by Gretchen & Simon on October 29, 2009 at 5:52pm

Gretchen & Simon

Grant Announcement

Through the fine efforts of Cammie Gray, PKS Kids was just awarded a grant for $29,500 which will be used to send awareness information to nearly 50,000 pediatricians throughout the country! The grant was written specifically for this endeavor and we are so thrilled and grateful to be a recipient!

Thank you Cammie!!!

Posted by Gretchen & Simon on October 26, 2009 at 8:38pm — 5 Comments

elaine and conor :)

just a lil note...

hi everyone,
just i would let you all know how conor is getting on , its being a while since i did a blog, well conor is still working at sittin up he is getting alot stronger he sits for about 40 to 50 seconds unaided which is brilliant. he is getting more active , when lying down he brings both his legs up and grabs them with his hands and pulls feet to his mouth, its really funny because it seems to tickle him and he laughs his head off. im doing baby massage on his face to help his low muscl… Continue

Posted by elaine and conor :) on October 18, 2009 at 9:30am — 3 Comments

Bec Paton

Hannah is 2

Hello everyone!
Our little baby turned 2 yesterday. Thanks to generous relatives, she now has a doll with its own pusher, highchair and even a little timber kitchen to cook Dolly's food. It is such a joy to see Hannah pretending to do all of things I still do with Sarah. When I give Sarah a bottle, Hannah gives Dolly one too. Soooooo cute!!! It is all so amazing to us to see "normal" development. I do feel lucky that Sarah was our first bub though, we didn't really realise how much more effort s… Continue

Posted by Bec Paton on October 18, 2009 at 1:58am

 
 

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