Contact Mary Tom comes home Tom in the PICU Tom in the NICU Tom's essential beginnings A nice spot for families of undiagnosed kids

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Welcome to the UDGD Spot's Parent's Place!
A nice place to start

I am still throwing the basics of this site up, so please bear with me! I just managed to get the forum up - where people can communicate with each other, ask questions, and such. This forum is woefully empty at this time - but hopefully this will change soon!

I would like to start off by listing some very important links for parents of children with rare or undiagnosed genetic disorders - this is where you need to start.

  • MORD - National Organization for Rare Diseases
    This site provides information on rare disorders which you can access through their website together with details of organisations/support groups in the US that can provide further information, support, etc.

  • MUMS - National Parent to Parent Network
    MUMS is a National Parent to Parent Network whose mission is to help parents who have a child with any disorder, medical condition, mental or emotional disorder or rare diagnosis make connections with other parents whose children have the same or similar condition. Please only contact this organization if you are a special child's caregiver/parent.

  • Office of Rare Disorders
    Includes: links to definitions, causes, treatments and publications; links to Institutes and Centers at the National Institutes of Health (NIH); links to glossary for defining technical language and an extensive list of rare diseases.

You can find helpful links here - and please feel free to add your own site - or your own favorite resource!

I have begun to write out a bit of Tom's medical history - so if you're interested, just click here to find out what we know.

I have just opened a chat room at mIRC named #Undiagnosed_Disorders. I am in this room most every evening from around 7:00 pm to midnight Pacific Standard Time.
This chat program is quite simple to use even if you are not familiar with it - just click here to download a program that will allow you to chat very rapidly on a plethora of topics with people world-wide!

This room was located on dal.net, but because of dal.net's inconsistant performance I have moved the chat room to EFnet. When you open the mIRC chat program, just click on file, then options. A box will open up with a plethora of choices and settings - but all you need to do is change two settings and add our room, and I'll walk you right through it.

Where it reads IRC Network, just set it to "ALL". The setting below allows you to choose which server you want to use to connect with the chat room. It may sound complicated - but it's not. Just pick any one of the servers listed that start with the word EFnet and then click on the "Connect to IRC Server" button and wait a half minute or so. If you get no connection after a few tries just go back and select a different EFnet connection from the list mentioned above. It can be busy here at times so you might have to try once or twice to connect, but it's all worth the effort.

After you are connected (you will know when you see a flood of text across your screen about the server). Just run your mouse over the icons at the top of the screen - one will say "Channels Folder". Click on it and you will see a list of rooms - chat rooms that you can visit. Click on the "Add" button on the right side of this box to add the UDGD Chatroom to your list. The top line asks for the channel - #Undiagnosed_Disorders is the channel name, number symbol and all. The next line requests a password - leave it blank. Following line asks for site description - write whatever you please, or nothing at all. Then just click "Add" and it will be on your list of channels - or chat rooms. Anytime you want to drop in, just go to the list of chatrooms and select #Undiagnosed_Disorders to come visit!

If you need any help setting this up I will understand completely. I have been doing this computer stuff for a while and often forget the stuff that seems obvious to me. Just click here to ask for a hand!

I am in the process of setting up a web community (so people can make their own web pages here). I would hope that I am not the only person out here who would want to share pictures and stories of their special kid - and I think it makes people feel better when they see other families in similar situations.

This page will eventually provide a list of books for working with these wonderful kids, and I am sure more ideas will come to mind as I work on this!

Anything else?

Well, wish me luck! I hope to get everything up and running before the end of March.
If you have any suggestions please drop me a message by clicking here.