My Nonprofit Reviews
Review for ALS WORLDWIDE, Madison, WI, USA
My thanks for the work done by Steve and Barbara and all who make up ALSWW is enormous to say the least. Their selfless dedication to investigate every avenue of potential treatment and assistance while striving to protect a desperate and highly vulnerable group is to be commended.
Their ability to successfully petition for an open label trial of Dexpramipexole has allowed me to slow the progress of this terrible disease and afforded me a commodity upon which no price can be placed – time with my family. At ages 4 and 9 my children have the myriad experiences of growing up still ahead of them and there is nothing I wish more than to stand by my wife and watch our children grow, to laugh and play with them, to pick them up when they fall down, and to give them the unconditional love that only a parent can know. These are things I had been told I would never know.
The efforts of ALSWW have given me more than just invaluable time with my family, they have also given me a glimmer of hope. The medications they provide help me to maintain a functional existence while my family and I wait for the breakthrough that will bring an end to this cruel and relentless disease. I have no doubt that an answer is near at hand, but without the efforts of organizations such as ALSWW this answer is at risk of remaining just beyond our reach.
I am deeply grateful for not only the medical support I have been given but also for the understanding and compassion shown by Steve and Barbara. They have been a rare source of warmth in what is often a cold world of life with ALS. I would ask any who can to support them in their endeavour to overcome this terrible disease and play a part in bringing hope and joy to thousands who have been given only despair.
Our sincerest thanks
The Edwards family
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