This website was born out of love and loss.
For me it started with the devastating experience of watching a loved one from the start to the end of her struggle with this incredibly cruel disease.
First, the shocking diagnosis....then the days and nights of watching her suffer. Watching the loss of the use of her hands.... then her legs, resulting in multiple falls and injuries.... then the lose of her speech and her difficulty swallowing... until she no longer could speak or eat.
Finally, watching her die, as her breath became labored to the point where she could no longer breathe.
During this painful and heart wrenching ordeal, watching the suffering of a person I dearly loved, I met her doctor, Orla Hardiman, MD, from Trinity College in Dublin. Dr. Hardiman generously provided answers to our desperate questions about trial drugs and alternative treatments that might provide comfort.
I later discovered that Dr. Hardiman was an internationally acclaimed researcher who, together with her team, had already made significant contributions in furthering the understanding of the puzzle of ALS.
The reason for launching this site is to hasten a cure for all those brave people living everyday with ALS..... and the families and friends who love them and do their best to comfort and care for them. And, finally, for all those, young and older, who are yet to be diagnosed with this fatal disease.
It's chilling to think that every 90 minutes in the US someone is diagnosed with ALS/MND and every 90 minutes someone dies from ALS/MND.
We are dedicated to funding the collaborative research with the international community and putting a stop to this terrible suffering!
Please, click here to see the work that is underway.
The international community Dr. Hardiman has been a part of over the last 24 years has uncovered new areas of understanding and allowed for greater pooling of information.
Dr. Hardiman has said that the mistakes of the last 20 years have been recognized. The discovery of the differences from one individual's type of ALS to another's, has redirected research and allowed for greater confidence that there will be new drugs and treatments found in the next few years.
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