Welcome. My name is Noah Coughlan.
I will be running across the United States to raise awareness for Batten Disease. I will run 2,400 miles from San Diego, California starting February 28, 2011 ,and ending on Jacksonville Beach, Florida July 9th, 2011.
I have been close friends of the Allio family of Vacaville, CA for 15+ years since the age of 10. I personally know and grew up with two sisters Catie Allio and Annie Allio who have Batten Disease. Batten Disease is so rare, affecting less than 1,000 children in the United States. After doing some research, I learned Batten Disease is potentially curable. With enough awareness and funding for scientists to further their research into this rare and fatal disease, a cure can be found. That is the ultimate goal.
Life presented me a window of opportunity. A challenge. A chance to do something big to help not only my friends , but also all the other children and families affected. To see my current progress across the USA, click here. Had to replace GPS unit on June 19, 2011. For progress prior to June 19, 2011, click here.
Contact Me at noah_coughlan@yahoo.com
Contact me at noahcoughlan@battenjourney.com
Check out the blog at blog.battenjourney.com
Juvenile Batten Disease is a childhood disease for which there is no cure. It is always fatal. Batten disease is a genetic neurological degenerative brain disease. (Our children's brains are dying daily, one cell at a time). Life expectancy is between later teens and early twenties.
Children born with Batten disease are born healthy and remain healthy until about age 5. At that time, a Juvenile Batten child begins to lose their sight, eventually going blind. They then begin to experience seizures, then cognitive loss, behavioral problems, dementia, and then motor loss. These brave children start life like most healthy children, and then by the later teens/early twenties, they are often wheelchair bound, unable to communicate, fully blind, and many times left in a vegetative state.
Our Batten children are heroes as they courageously battle everyday to hold on to what they had the day before. They bring a richness and joy to life that only they could possibly radiate to the world. Our hope remains alive a we continue to keep working towards a cure. We would like to humbly thank you for your support to our kids and to the families that battle each and every day as we fight to save our beautiful children.
Catie (20 yrs) almost lost her battle this last January and again in June to Batten Disease with pneumonia. She remains a fighter every day she is given here with her family. She has already reached the life expectancy for a Batten child. Catie was fortunate this time...but time is running out for her and for so many of our children.
Annie, too, battles the symptoms of this deadly disease on a daily basis...unable to see the beauty of Spring, or the faces of a family that loves and cares for her. She cannot manage without her 22 pill regime each day to help with symptoms such as seizures, psychotic episodes such as violent outbursts, self infliction, delusions and hallucinations, etc.
Time is running out. Please help us find a cure. Our children are facing the battle of their lives.
For more information, please contact The Batten Disease Support and Research Association at www.bdsra.org Please sign the guestbook and let us know you were here.
May God bless you sweetly,
The Allio Family
Donations may be made to the BDSRA. Please contact for more details