Hi TTD, I set up a Facebook profile with my pictures, videos and events and I want to add you as a friend so you can see it. First, you need to join Facebook!...
Hi Rhonda I cant even find myself,,lol on it , I dont remember , did I set one up for me , or did my crazy friends they always play jokes on me ,, I will have...
Maria, I don't know if you remember me my name is Melissa and I had a daughter Makenna that was born with TTD and passed away when she was 8 months old. I...
Hi Melissa I have not forgotten you or Makenna , if its ok I would like to add her to the visual slide that I have made in memory of how beautiful angels that...
Hello and for those who celebrate Easter Happy Easter I hope it has been a wonderful break for you all . I am posting some photos in Sammy-Joes Album of some...
Hello Maria, I first saw the new photo's before i did read your message. I recognized CS in these children immediately. They have CS type 1 Maria, i want to...
Hello and Thank you I will definately let the families know and also I will ask if I can pass on their details , they are aware of the network as I have let ...
Hello everyone I have heard from a Reporter from London her name is ISLA and she is interested in doing a story about TTD and would like people in England that...
All the aussie kids that would like to get involved with the stories being reported on Sammy-Joe can do so by contacting a reporter called Cheryl Critchley,...
Hello Maria, As i'm from Holland, it's not easy for me to speak on the phone in English. I'm a better writer then talker in English. hèhè That's why i sent...
Hello Maria, I also want to let you know that Jackie Clark (director CS group) has met Vera Price. She's the woman who discovered TTD. Jackie may be able to...
Hello everyone!!!!Hope everyone is doing ok.I was looking around on the internet and found a site called www.imakid.org they send dolls to kids that have lost...
Hi Maria, Jackie Clark, president of the Cockayne Syndrome network, has met the woman who discovered TTD. Her name is Vera Price. I don't know if you ever had...
Hi Daan I havent had a chance yet to contact Jackie as I have had alot of interviews for the media , but as soon as I get a chance I will try and call her or...
Hello Maria, Thank you for your kind words!!! Puk is a very sweet little girl. Puk is seriously mentally disabled. She has a visual and auditive disorder. ...
I would like to welcome all our new members , please introduce yourself and please do read all the post . we will try and provide some answers to your...
On April the 12 th we had the Launch to the Friends of Sammy-Joe Foundation and it was a great success , we raised $7226.00 , we have already helped three...
Hi Maria, well done ! You are an amazing lady with energy to burn. congratulations Sharon, Neville Aaron & James _____ From: TTD-support@yahoogroups.com...
Hello everyone Just wondered how you are all doing ? Life s been pretty busy for us , I have a newletter for the Friends of Sammy-Joe Foundation you can have a...
Another one involving enlarged liver/spleen as described with Kyle is Multiple Sulfatase Deficiency...don't know if this helps at all. Just info I've come...
Hi my name is Kelly and my son Jake (he is almost 8) has very similar issues as Dottie. Right now our biggest battle is the bi-lateral hip subluxation, in...
Kelly MacLeod
kmacleod@...
May 12, 2008 1:10 am
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Hi my name is crystal my son has T.T.D. also.His name is Matthew (and like Jake he is almost 8 will be june 16th)He sounds so much like Jake. I took a copy of...
Hi Thank you to everyone for all the kind words , I enjoy being a big part of this group ,when ,Michelle , Kelly, Rhonda and I originally started the group...
I am so sad to hear that Jake has Bells Palsy please stay strong and about his sinus trouble , I know how painful that is I have struggled with sinus problems...
Hi Michelle Could you call me please I really need to speak to you my phone number is 0393056182 I would seriously love it if you could come down to Melbourne...
