Monday, 06 September 2010

Main Menu
Home
News
Articles
FAQs
Links
Search
Search
Contact Us
Syndicate
Home

Welcome to SpinaBifidaParents.com! PDF Print E-mail

Joey (11) in his race chair.
Joey, 11, is a wheelchair athlete!
What is SpinaBifidaParents.com? It's the new home of the email list that's been around since before 1997. We will take a while to transition from Yahoogroups to this new format, so look around, get comfortable, feel free to make suggestions!

Why do we need a new home? Yahoogroups no longer suits our needs. Our membership is growing, and considering the topic we are talking about (spina bifida) we are "losing" valuable information in the Yahoogroups archives because of extremely poor search features. New parents and parents-to-be, as well as experienced parents, need an easier way to find and access information. 

Another issue is the fact that posts are delayed in Yahoogroups due to moderation. (Necessary due to spamming.) Frankly, the list is too large for me to remember who is and isn't legitimate and how often they post. So the whole list is moderated. In the new format, moderation would be unnecessary because it's easy for moderators to go in and delete offending posts, and they aren't "transmitted" to the entire membership.

There will be no more problems with Yahoo not playing nice with other ISPs (like AOL) and bouncing mail. Yahoogroups has been having intermittent service issues lately which have been slowing down access. 

We will now have specialized, topical forums so if someone doesn't want information about AFOs they don't have to wade through fifteen posts on the topic in their email. Many of our members are already using the read from the 'net setting on Yahoo, so this will be no different than doing that.

We can now have informative articles archived by subject, easily viewable. An extensive links section is now possible, and members can submit articles to the website.

The new features will allow us to grow as a community and become closer. Yes, there will be growing pains at first as people transition to the new format. But as you get used to it, you will readily see the advantages over the older format.

 

 
"The Book of Boo: Raising a Wheelchair Winner" PDF Print E-mail

"The Book of Boo: Raising a Wheelchair Winner" is now available for sale from Lulu.com

This book is a hopeful, inspiring look at spina bifida and how it effects one family and a very spectacular child.

This book is for parents, expecting parents, friends and family of a child with spina bifida (or other disabilities) and medical professionals who want to better educate themselves about the parents' point of view. This isn't just about the medical aspects of a disability, but the mental and emotional aspects and how to raise the happiest, healthiest child possible.

It's also about overcoming disabilities in all areas of life. And hopefully, it will alleviate the worry and frustration of new and expecting parents of a child with spina bifida and show them they are not alone.

Click here for more information and to purchase your copy.  

 

 
Folic Acid & Spina Bifida PDF Print E-mail

Discuss this article on the forums. (0 posts)

There is a wide-spread misconception that taking folic acid will "prevent" spina bifida and other neural tube birth defects. The truth is, while in some cases it might help, it will not prevent spina bifida from happening in all cases. Many mothers were already taking folic acid when they got pregnant and still had babies with spina bifida.In other words...

It. Just. Happens.

Here are a collections of emails about folic acid and related issues.

Read more...
 
My unborn baby has spina bifida! PDF Print E-mail

When an expecting parent gets a diagnosis of spina bifida in their unborn baby, it can be overwhelming and scary. But please, do not panic! You are going to have to learn a lot of information over the next days and weeks and months. You have questions that many people cannot answer until after your baby is born. However, please know there are many people out there to support you, and this quick list of things to know will hopefully help you make it through the next days and weeks ahead. 

Read more...
 
Spina Bifida Basics PDF Print E-mail

Spina bifida is a congenital birth defect. It is a neural tube defect effecting the spinal cord. Because it effects the spinal cord, it can cause issues with other parts of the body, depending on the level of the defect. 

Read more...
 

Popular Articles
Copyright 2007, SpinaBifidaParents.com , All Rights Reserved