Fellow ALS Patients

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A Message for My Fellow ALS Patients

If you have ALS and have found your way to this site, please read the following message from Aimee.



Please, please, please, take this website in the spirit in which it is intended: as an attempt to share an up-close-and-personal look at the devastating effects of ALS. I am telling my own story, reluctantly, because I believe that a personal account is much more effective in conveying the true impact of ALS than the dry statistics or clinical descriptions that are readily available elsewhere.


However, I absolutely do not think I’ve cornered the market on suffering, and I know that I am so fortunate to still have the mobility and muscle function that allow me to make the most of each day. I can only write what I know; I cannot begin to fathom the struggles of those whose progression is ahead of mine. I know your stories are so much more poignant than my own.


A Request

Thus, I have a request. I’d love to add a page (or pages) to this website that would focus on other ALS families. If you have photos of you and your family you would like to share, please send them to me. If you’d like to share a story of your own, please forward it to me. If you have some ideas but don’t feel comfortable writing the “story” yourself, I’d be glad to take some information and take a stab at writing it for you. It’s my firm belief that the more faces and stories this site contains, the more powerful it will become.


I’m determined to find a way to turn the horrible reality of my ALS diagnosis into something good and useful, and I feel compelled to do whatever I can to raise awareness on behalf of the ALS community. Whether or not an effective treatment or cure is found in my lifetime, I want to do everything I can to ensure that someday in the future, no families will experience what ours are going through. This website is my meager attempt to make a difference.


Wishing you great strength and courage in your battle,