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ALS Worldwide welcomes any questions or comments you might have.  We provide free, personalized and confidential support services to anyone in the ALS community—whether you are a patient or a loved one, friend, health care professional or caregiver of someone diagnosed.

Get help now! Fill out the Online Profile Form or if you would prefer to talk with someone by email or phone first, please contact us at [email protected] or 1-608-663-0920.

For all other inquiries, please use the email form to the right and we will respond promptly to your request.Thank you.

ALS Worldwide
5808 Dawley Drive
Fitchburg, WI 53711‑7209

ALS Worldwide
September 08, 2016

Shayne Varga

"My son Shayne Varga was diagnosed in September 2013 after experiencing some numbness in his wrist, and leg. Then, his words started slurring. 

Initially he believed it was due to working two jobs which had him on his feet and using his hands quite a bit. When his speech became impaired, we knew there was something wrong. That's when we received that devastating diagnosis. Of course, we just couldn't believe this was happening to Shayne. He was only 39 years old, he'd been an athlete all his life, and he had been given the gift of a child and two beautiful step-children. His life was just beginning, this had to be a mistake!

Alas, it was not. It's the hardest thing for a mother to endure - to watch her once strong, independent child become weak and dependent without being able to "fix" it. To look in his eyes and see the pride that he must swallow to have his mother once again help him eat, go to the bathroom, and put him to bed. However, he took the only blessing in my eyes that ALS has to offer.. He made the most of every moment, making sure that all those he loved knew it and knew just how much. Eating every food he loved while he could, knowing that too would end. Making sure his financial affairs were in order to provide for his family after his passing, which came on July 21, 2015.

He was in line for clinical trials, but by the time his turn arrived, he was no longer eligible. I found out from a friend of his later that, while we were encouraging him for these trials, Shayne's comment was, "I'm glad these trials are showing signs of finding a cure, and I pray they do, but it won't be in time for me." No self pity, no bitterness - just a quiet resolve as to what was to come. He lived and he loved, and he no longer suffers at the hands of the beast called ALS. Isn't it ironic that as a child all he ever wanted to be when he grew up was a New York Yankee? Well, I believe he now plays in the" Field of Dreams" with the best of them, including Lou! 

ALS Worldwide, keep on keeping on - I watched Ben's video and I commend that you have given your life so that other mothers, fathers, sisters, brothers, and children might not have to witness the degradation of this disease, or feel the pain of the loss of another loved one. May God bless and provide for you in your efforts."

- Martha Varga


Make a donation in memory of a relative, friend, neighbor, colleague or other loved one is a valuable and positive way to celebrate their life. Your gift can make a real difference to those living with ALS/MND now and in the future.

To make a gift, please use our online donation form with the "Dedicate this gift to a friend or loved one" option selected. 

To donate by mail, download the donation form PDF and print and mail the completed form with your check or credit card information to this address:
5808 Dawley Drive, Fitchburg, WI 53711.

We thank you for your gift in honor of a special person or occasion, or in the memory of a loved one.