Anyone heard of Noonan Syndrome?

Hi, seahippie!

Yes. It's listed all over the Internet.

Noonan Syndrome - Google Search (http://www.google.com/search?hl=en&safe=off&sa=X&oi=spell&resnum=0&ct=result&cd=1&q=Noonan+Syndrome&spell=1)

So, what's up about that as to why you have asked the question, please?

Thanks!

I have a little boy with NS. I would like to hear from others with NS or hear positive stories about NS peoples lives.

Thanks for the explanation! I hope that your little boy is not suffering any! I know that we have a number of people on this site who are afflicted in various ways with different kinds of medical disorders and that we do have at least one registered nurse on the site, J_9 who is very helpful concerning things that are medical in nature.

What I'm saying is that you'll get lots of support here!

Cool thanks! My son isn't suffering at all... he is immensly happy and LOVES music. He plays the drums like a legend too!
Cheers

How old is your son, please?

I'm greatly into music. If you could read my profile, then you would understand that. However, profiles haven't been available since the upgrade in the program for this site.

He is 6yrs old... music is his passion

Just for some additional background about your son for others that do come along to respond to this thread, what sort of treatment is your son currently getting for his condition, please?

Thanks!

He was lucky enough to escape any heart complications associated with NS. He only takes medication for his epilepsy. He goes to a fantastic special school were he learns so much! He sees a peadiatrician every 6mnths and that's about it. That's about it as far as treatment is concerned.

Are you aware that there is a support group website for that condition? Link is below.

The Noonan Syndrome Support Group Website (http://www.noonansyndrome.org/)

Although, I do think that it would be really cool if there could be some sort of support group also on our website here!

Yes I have seen that one... thanks... I would like to start an Aussie based support group... and yes it would be totally awesome to have a support group on this site...

I agree that it would be great to have that sort of thing here! Did you know that you could also start a support group by having a free website or blog of some kind?

So how do you start a blog or free website? Should I post this question on another thread?

You don't have to post it by starting another thread since it's already being developed as part of this thread. You may want to start a separate thread for an in-general or specific support group though. But, also how to do that could also be developed on this thread.

YouTube - Blogger: How to start a blog (http://www.youtube.com/watch?v=bU4gXHkejMo)

Look what I found... how to make your own blog! Thanks for giving me the idea!

Now, I wish that I wasn't on a dial-up! Takes me forever to download YouTube things!

Oh bugger... you can put www.blogger.com..then create a Google blog account... its totally awesome!

Yes, I do know about posting blogs and having websites. I manage them for a number of things and not just myself.

I'm going to post something that I have posted on a number of threads now. It's concerning advertising for businesses. I'm sure that you'll get the idea of what I mean about starting something for free on the Internet that gets excellent exposure.

You could advertise on any number of sites for free and put links on them to draw people to your websites and/or blogs about your support group.

None of this will cost you any money at all!

Here it is:



There are many places where you can have a free website or blog where you could advertise your business or anything else for that matter. Some of them can be found by clicking on the following searches.

http://www.google.com/search?hl=en&safe=off&q=Free+Website (http://www.google.com/search?hl=en&safe=off&q=Free+Website)

http://www.google.com/search?hl=en&q=Free+Blog (http://www.google.com/search?hl=en&q=Free+Blog)

Although I am in the Yellow Pages of the local phone book, most of my new business comes from the free ads that I have placed on the Internet in some way. It does take some time to set things up. But, once you have done it, you are set. You just need to keep track of when you might need to renew your ads. Some of them will let you know when it's time to renew, and most of them won't On some free advertising sites, your ads might not need to be renewed for years. For others, it ranges from maybe 14 days to 90 days.

I copy and paste what I have advertised into a message in my Drafts folder in the email program that is my primary one, and that would be Outlook Express. I also have a file in my email program that is titled "Passwords." It includes all passwords used as well as user names. Not all sites are going to let you use the same password, and the user name that you select might not be available on a particular site.

A really important thing to remember when doing online advertising is that it's not necessarily your name or the name of your business that people are going to be looking for, but what you do and where you are located. So, how you word your ad and the additional keywords that you use in it are very important. Google doesn't look for repeated words in site. However, some other search engines do.

There are a host of free advertising sites available. Most of the best ones that get the best exposure are on the following list. I have been doing online advertising for over three years now. It has paid off...

One time, someone found me looking for goats in Iowa. They are an animal rescue. They saw my ad on a site where one of my piano tuning ads was located and decided that they wanted to have their piano tuned.

I love it when people find me by accident! It could happen for you too with your business!

I do also frequently drive around and post my small advertising "shingle" with the pull-off tabs anyplace where I can find a free, public bulletin board where I can post them. These can be places like grocery stores, restaurants, bars, Laundromats, bowling alleys, public libraries, etc.

Here is the list of free advertising websites that seem to get the best exposure when people are doing searches for what they want on the Internet. Some of them are even international as far as where the ads reach, in case there is someone who might read what I have posted who wants to advertise on an international level. There are sites that don't get good exposure and, I don't use them. A person would have to be a member of and frequent those particular sites in order to know what is listed on them. I even post on sites that are located in other countries because the exposure is so good!

craigslist: san francisco bay area classifieds for jobs, apartments, personals, for sale, services, community, and events (http://www.craigslist.org/)

(To use Craigslist, you just find and post on the one that is near you.)

USA - cliQs.com (http://www.cliqs.com/)

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DomesticSale - The Effective Free Classifieds (http://www.domesticsale.com/)

Free Classifieds Ads - Internet Advertising to Sell Online (http://www.webclassifieds.us/)

Vast.com - Search All The Classifieds On The Web (http://www.vast.com/)

PennySaverUSA Classifieds Online: Local ads in California (http://www.pennysaverusa.com/)

Free Classifieds - FinditClassifieds.com (http://www.finditclassifieds.com/)

Oodle.com Classifieds - Search local online classifieds (http://www.oodle.com/)

BuySellCommunity Classifieds - Buy & Sell Locally : Free Online Classifieds (http://www.buysellcommunity.com/)

Free Classifieds @ Adpost.com (http://www.adpost.com/)

Free Classifieds, Free Ads, Free advertisement, Business Opportunity (http://www.classifiedsforfree.com/)

Free Classifieds - FinditClassifieds.com (http://www.finditclassifieds.com/)

Free Advertising, Free Classifieds, Free Classified Ads, Free Ads, Classified Ads, Free Classified, Bulk Email Advertising, Opt In Email Marketing Services, Email Lists, Classified, Free Ad, Advertising Free, Classifieds, Classified Ad, Free Classifi (http://www.inetgiant.com/)

http://quadcities.kijiji.com/ (http://quadcities.kijiji.com/) You can change the country and city when you list there.

http://www.evelez.net/ (http://www.evelez.net/) Although it might appear to be connected with the one above, it is different. You can also change country and city.

http://www.livetray.com/ (http://www.livetray.com/)

http://www.vvnvv.com/index.asp (http://www.vvnvv.com/index.asp)

http://www.alibaba.com/ (http://www.alibaba.com/)

http://www.hotfrog.com.au/ (http://www.hotfrog.com.au/)

http://www.kellysearch.com/ (http://www.kellysearch.com/)

http://www.kbclassifieds.com/ (http://www.kbclassifieds.com/)

http://www.oodle.com/ (http://www.oodle.com/)

http://www.olx.com/ (http://www.olx.com/)

http://www.topix.com/ (http://www.topix.com/)

http://www.isell.com/ (http://www.isell.com/)

http://www.kutvclassifieds.com/Main.do (http://www.kutvclassifieds.com/Main.do)

http://www.gumtree.com/ (http://www.gumtree.com/)

http://www.flugpo.com/ (http://www.flugpo.com/)

Some of the sites listed above are also specific to Australia.

Noonan Syndrome Support Australia (http://noonansyndromesupport.blogspot.com/)

Look.. Ive started.. a little simple at the moment.. but a start.. Thanks for all your info!

I took a look at it. Great job! At least it's a start! :)

If you go to your Profile here, there is now a section on the left-hand side of the page where Networking and then Social Groups is listed under it. You might want to consider starting something there also.

That's something that's new to this site. So, we'll see what happens with it..

Medical Conditions & Diseases - Ask Me Help Desk (https://www.askmehelpdesk.com/medical-conditions-diseases/)

The above topic area might also be a topic area where a thread could be devoted to a support group for something like what your son has.

I have to go to bed now. Have to direct a performance of my barbershop chorus tomorrow as well as play for a very difficult show. I will be checking back in with you.

Cheers!