========================================================================= Date: Sun, 9 Mar 1997 09:38:35 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Jennifer M. User" <CMay440018@AOL.COM> Subject: APERT

Hello everyone!

I was browsing through the mailing lists as a new member to AOL and discovered an Apert's Syndrome mailing list. I am now subscribed to this mailing list.

My older sister was born with this syndrome 34 years ago. At that time, so little was known about the syndrome. (Some but not much). When I told my parents about this mailing list, one of their first questions was, how do children develop this. Is this passed on recessively? If anyone knows the answer to this and feels like writing to me I would appreciate this.

Also, Is there a newsletter I could subscribe to also?

Thank you in advance for any help. ========================================================================= Date: Mon, 10 Mar 1997 10:38:08 -0800 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Christine L. Clark" <apertnet@IX.NETCOM.COM> Organization: Apert Support & Information Network Subject: Re: APERT MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Dear Jennifer,

I am Christine Clark from the Apert Support & Information Network. This network has a newsletter, Apert News, that goes out three times a year, current mailing list is 160. There is also a networking list that your sister could get on so she could get in contact with others around the USA with Apert, many adults. As a matter of fact, I just got a new member last week. A woman who is 39 years old who never knew there was anyone else in the world with Apert besides her until she found this network. She is very interested in finding pen pals. The networking list currently numbers 57.

As for the genetics, the gene has been identified (the article about it is in one of my first newsletters). The change in the gene on chromosome 10 called "Fibroblast Growth Factor Receptor 2" or FGFR2 is responsible for the features of Apert Syndrome. The majority of Apert cases are called "new mutations". Some studies have shown that it occurs more often in children of older fathers.

Since you found this list by browsing, do you know of Teeter's Page yet? That is where this list server started, by the parents of Teeter who also has Apert Syndrome.

The URL is: http://members.aol.com/CatNDon

If your sister would like to get on my mailing list and possibly on a networking list you can contact me with her name and address.

Christine Clark Apert Support & Information Network P. O. Box 1184 Fair Oaks, CA 95628 (916) 961-1092 (phone & fax) apertnet@ix.netcom.com

Jennifer M. User wrote: > > Hello everyone! > > I was browsing through the mailing lists as a new member to AOL and > discovered an Apert's Syndrome mailing list. I am now subscribed to this > mailing list. > > My older sister was born with this syndrome 34 years ago. At that time, so > little was known about the syndrome. (Some but not much). When I told my > parents about this mailing list, one of their first questions was, how do > children develop this. Is this passed on recessively? If anyone knows the > answer to this and feels like writing to me I would appreciate this. > > Also, Is there a newsletter I could subscribe to also? > > Thank you in advance for any help. ========================================================================= Date: Mon, 10 Mar 1997 20:43:44 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Jim Younkin <jim@PHILLYDINE.COM> Subject: Re: Shunts and vomiting MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

To follow up...

Sara did finally stop vomiting nearly one week after her shunt surgery. It's difficult to say if it was caused entirely by the surgery, or in combination with a virus. You see Kelly woke up Friday night and threw up, then my son Jordan was hit Saturday afternoon, he was fine Sunday and Monday then barfed at school on Tuesday.

I am pleased to report that one week later, the Younkin family has returned to good health...oops! Spoke to soon, our oldest daughter Katie now has the flu. When does it stop? <g> When they're in college I suppose.

Thanks to all who replied, much of your advice was taken, as well as your encouragement.

Now we are preparing to move to Pittsburgh, and begin once again to find doctors, surgeons, and such. Thanks again to the Camous family...sorry we didn't get to meet. I'm sure there will be time again soon enough.

Jim & Kelly Younkin ========================================================================= Date: Wed, 12 Mar 1997 16:50:08 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Chad & Denise Graham <cgraham@INFOAVE.NET> Subject: ankles MIME-version: 1.0 Content-type: text/plain; charset="us-ascii"

Hello to everyone. Hope all is well. I have a question about ankles on aperts children. Have any of you had problems or deformities? If so what was it and what did you do about it? Daryl's ankles look different when he stands and the ball on the side of the ankle is not the same or in the same place. It is hard to explain, but I can tell something is wrong. We are going to see the hospital Friday, and we plan to ask to see an orthopedist. I would like to have some information and experiences to take along with me. It is always nice to have experiences to let the doctor know that I am not just guessing. I am doing my research. Thanks for all of your help.

Denise Graham ========================================================================= Date: Wed, 12 Mar 1997 20:53:28 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Tony & Sandy Deakins <TDeakins1@AOL.COM> Subject: Re: ankles

Denise- Our daughter, Casey, has had one foot surgically "aligned" when she was nine which was a year ago. She is about to have the other one done. Where the foot joins the ankle is often - as in Casey's situation - fused. This along with any other maladies affecting the foot structure can cause the ankle to appear abnormal. I would tell you, however, that Casey's posture and ability to walk and run has improved vastly as a product of the one surgery she's had. We have high expectations for the results of both combined. Tony Deakins ========================================================================= Date: Thu, 13 Mar 1997 23:46:25 +1300 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Howard & Ann <howrdnan@IHUG.CO.NZ> Subject: Virus warning Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

This message was received today from a friend ( an impeccable source) in the corporate computing world:

"This information was received this morning from IBM, please share it with anyone that might access the Internet: > >If anyone receives mail entitled; PENPAL GREETINGS! please delete it WITHOUT reading it. ON NO ACCOUNT BE TEMPTED TO OPEN AND READ THE MESSAGE. > >This is a warning for all Internet users. There is a dangerous virus > propagating across the Internet through an e-mail message entitled 'PENPAL GREETINGS!". DO NOT OPEN ANY MESSAGE > ENTITLED "PENPAL GREETINGS!". The message appears to be a friendlyletter asking you if you are interested in a penpal, but by the time you open it to read it , it is too late. The "trojan horse" virus will have already infected the boot sector of your hard drive, destroying all of the data present. It is a self-propagating virus, and once the message is read, it will AUTOMATICALLY forward itself to anyone whose e-mail address is present in YOUR mailbox. This virus will destroy your hard drive, and holds the potential to destroy the hard drive of anyone whose mail is in your in box, and whose mail is in their in box and so on. If this virus keeps getting passed, it has the potential to do a great deal of damage to computer networks worldwide. > > Please, delete the message entitled "PENPAL GREETINGS!" as soon as you see it. And pass this message along to all of your friends, relatives and the other readers of the newsgroups and mailing lists which you are >on."

I hope noone has received and opened this message!

Our Amy was filmed for a TV program on disabilities today. Had a 5 member crew here at home for a couple of hours. What a ham! A magnificent performance carried off with great glee. She was supposed to be the supporting act while I was being interviewed wearing my hat as leader of our national coalition of genetic support groups. No doubt who was the star! Even the dog, Holly, who has ace ball skills was worth a lot of tape. Will be interesting to see what finally goes to air in a month or two!

Cheerio , Howard, Ann and Amy - New Zealand ========================================================================= Date: Thu, 13 Mar 1997 07:53:18 -0600 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Bob Horning <Bob.Horning@CORP.HONEYWELL.COM> Subject: Re: ankles

Denise

Krista has deformed ankles too. I believe that's common in Aperts, but the degree varies from one person to the next. Her leg bends outward at the ankle, so she tends to walk on the inside edge of her foot. Inserts in her shoes have been enough to compensate for that so far. However, we've been noticing that her right ankle seems more bent than before. So we may need some work done there in the future. I'd appreciate hearing what you learn.

Bob _______________________________________________________________________________ From: Chad & Denise Graham on Wed, Mar 12, 1997 5:45 PM Subject: ankles To: Horning Bob; Information exchange for Apert Syndrome and other craniofacial a

Denise Graham ========================================================================= Date: Thu, 13 Mar 1997 11:54:59 -0500 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: George Starr <daystar@IGLOU.COM> Subject: Re: Virus warning MIME-Version: 1.0 Content-Type: text/plain; charset=ISO-8859-1 Content-Transfer-Encoding: 7bit

> "This information was received this morning from IBM, please share it with > anyone that might access the Internet: > > > >If anyone receives mail entitled; PENPAL GREETINGS! please delete it > WITHOUT reading it. ON NO ACCOUNT BE TEMPTED TO OPEN AND READ THE MESSAGE. > > > >This is a warning for all Internet users. There is a dangerous virus > > propagating across the Internet through an e-mail message entitled > 'PENPAL GREETINGS!". DO NOT OPEN ANY MESSAGE > > ENTITLED "PENPAL GREETINGS!". The message appears to be a

This is as old as the hills, unless you download a binary program and the execute it you will not get a virus. Reading a message only displays text. You have to any programs to get a virus. If not I think we would all have viruses. Some word processors have a macro function that can cause harm, but not just reading a mail message or displaying a picture. If you worry about it get a virus scanning program, or even a virus shield program.

Thanks George ========================================================================= Date: Thu, 13 Mar 1997 14:21:54 -0800 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: "Donald A. Sears" <dsears@SCRS.STATE.SC.US> Subject: What in the world happened to Cat and Don??? MIME-Version: 1.0 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit

Dear friends,

I know we've been silent for much too long. These past couple of months have really been hectic for me because of tax season, which of course, is good, and due to the most recent hardware upgrade at home. It's hard to believe, but I have not had time to even dash out a quick note to all my friends on the list. I DO make time to download and save all of the list mail, and the personal mail you have sent, and very soon I'll have time to read it all and hopefully respond.

You'll notice I'm writing from a different address - this is my address at work. I now have full-time access to the net from my desk, so if you want a faster response please write to me at dsears@scrs.state.sc.us and I'll get to it a lot sooner. I am subscribed to the list under this address and will probably be writing most of my responses from here. My first project will be to print out all of the unanswered/unread mail and respond to it.

I know many of you have signed on to the list and sent me personal mail and I've not answered, but that will change soon! I apologize and hope no one will hold it against us!

That's about it for now - Teeter's doing great, as are Cathie and I - we're looking forward to a visit from George and Rosemarie Starr very soon, other than that, no big news. I can't wait to read all of YOUR recent happenings!

Maybe, MAYBE, I'll even be able to do a web page update in the near future - I've got all the tools I need both here and at home, so.....

It's great to be back in touch - Talk to you all very soon.

Don ========================================================================= Date: Fri, 14 Mar 1997 07:49:59 -0700 Reply-To: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> Sender: Information exchange for Apert Syndrome and other craniofacial anomalies <APERT@LISTSERV.AOL.COM> From: Patricia Bacon <baconptf@TELUSPLANET.NET> Subject: Amy's film stardom (was Virus warning) Mime-Version: 1.0 Content-Type: text/plain; charset="us-ascii"

Thanks for the warning Howard and Ann. I'm thrilled that you and Amy are doing film. I am trying to find on-camera resources for some videos that we want to make. But people aren't jumping out of the wordwork to volunteer. It's such a personal thing. Your little girl sounds just like mine. What fun!

Would love to see you on camera. Any chance of getting a copy of the video? You can private mail me, if you wish. Pat Bacon, calgary, canada (colony in the northern hemisphere) mailto: baconptf@telusplanet.net

Thanks. Pat