Children Get ALS, too.

I hate, loathe and despise the title of this post with all my being. Children. Get. ALS. They die from ALS. My amazing 17yr old daughter, Hayley, died from ALS. She had no promising treatments available to her when she was diagnosed with a 100% fatal, heartbreaking, devastating and cruel disease.

Most people don't know what ALS is, let alone know that children can be diagnosed with it, too. Even the most experienced persons in the medical field are largely unaware that this disease can strike children, teenagers and young people. This website is dedicated to pediatric and juvenile ALS and was born out of a need to raise awareness that children get ALS, too.

Awareness is the first step in leading to promising treatments for young people who are diagnosed. Without awareness there can be no funding and without funding there will be no promising treatments or a cure; but there is hope on the horizon in 2021. Personalized, precision medicine is no longer a far-fetched idea. Gene silencing and gene-editing therapies are coming to fruition in research labs and even in clinical trials. Science is edging ever closer but funding is a never ending need.

My hope is that you'll take time to check out the ALS stories of all the brave and incredible children highlighted on this website; and my hope is that even if this site helps just one family feel less alone in navigating an ALS diagnosis for their child then it has fulfilled it's purpose.

Some day down the road, I would love to be able to establish a non-profit, in memory of Hayley, dedicated to raising much needed funds for research into pediatric and juvenile ALS.