Hello to all and thank you for taking the time to look at the group I have established here on Firefighter Nation.

Let me first introduce myself, my name is Kevin O'Toole. I am currently employed in a Law Enforcement profession. I have been and still am a Volunteer Firefighter in NY State and currently in an inactive status but still a member with the Waverly Volunteer Fire Department in NY State. I have been a member with the Southport Volunteer Fire Department in NY as well as the Nichols Volunteer Fire Department in NY State.

I have a total of 4 children. My oldest and youngest sons are diagnosed with X-Linked Adrenoleukodystrophy also referred to as ALD. I had never heard of ALD until the beginning of this year and there is a story that I won't get into of how we came about learning about it, but I will say this it had a lot to do with the internet and the use of the search engine Google which ultimately pointed us to many different links related to ALD.

Our oldest has just gone through a Bone Marrow Transplant to stop this deadly disorders progression and we are hopeful that all continues to go well. At the time of this writing he is at day +19 post-transplant so we have a ways to go.

Since learning about the disorder myself it has become apparent that more needs to be done toward raising awareness and education for ALD as well as supporting organizations that are in search for a cure. There is no cure and the only hope for an ALD boy that begins to develop the de-myelination of the myelin sheath is a bone marrow transplant. This disorder ultimately leads to death of young adolescent males if not stopped.

Here are some links for all of you to visit related to ALD to help you understand it better and hopefully encourage you to join this group.


A Home page I have established with information and links related to ALD and other rare disorders!
Be a Hero, Become a Donor
The Stennis Foundation, supporting all Leukodystrophies!
The Adrenoleukodystrophy Foundation!
Fight ALD Organization
The Stop ALD Organization
The National Marrow Donor Program
ALD Life Organization for those of you in the UK
Oliver's Army, another UK link!
The Myelin Project for Research & Education for Demyelinating Diseases

Hopefully these links will get you interesting in supporting this group and organizations outside of Firefighter Nation. There are few that have bigger hearts than we and with all of your assistance in this the educational and awareness process that I and others are attemmpting the word Adrenoleukodystrophy and what it is about will be known worldwide.

Please let everyone you know on Firefighter Nation know about this group I have set up and if any of you utilize twitter.com you can also help me in my quest there of raising awareness. Here is the link to my twitter site twitter.com/otoole4info.

I thank you all in advance for taking the time to read this welcome message I have posted.

Kevin O'Toole