Everyone visit the site AC4ALD.com. It's in progress, but up and runnng. Plenty of useful ALD Links! AC4ALD is and has hopefully provided a few families some useful information.
Another site that I have started and could use all of your assistance in keeping it going is OTOOLE4INFO.COM This site brings a wide variety of useful information related to rare diseases and disorders. Provides a number of good community links and persons working for a better future for all. The site also provides some excellent and informative blogs that you may find of interest.
Hello and welcome to otoole4.info.
Here is a brief story about why this page is here and what it is all about. Two years ago our oldest son, who is now 8, was diagnosed with Addison's Disease. He was 6 at the time he was diagnosed with Addison's. As of January 6th, 2009 he was diagnosed with Adrenoleukodystrophy (ALD) that is affecting his brain.
We have three other children as well. All of them have been tested for X-ALD at present and it was just recently learned that our youngest son, 16 months old, also tested positive for X-ALD. There is much to learn about ALD and other life affecting rare disorders.
We set up this web page so that people could access links related to Addison's, ALD and other rare disorders quickly. My wife, Nicki, and I are still learning a lot about ALD and other rare disorders as we proceed with treatment of our oldest and learn how to reduce the risks of the effect of the disorder for our youngest son. Our oldest is already experiencing signs and symptoms of the cerebral form of the disease. Our youngest son does not have signs and symptoms yet and we will continue to learn how to reduce the chances of him developing them.
While doing the above, I invite all of you to learn along with us.
Those of you that know us, know how we work and know that we intend to do what we can for our children and will standup against this and any other obstacle that tries to get in our way for the health and safety of our children and family.
Keep us in your prayers and visit often as we further develop this site.
