Contact

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
February 08, 2017

Bringing Hawaii To Hernando

Donna Neff-Zubeldia and her husband were married just two months before he was diagnosed with ALS. They loved to travel and visit beaches, but when Hernando became bed bound as a result of his disease, they were no longer able to do so.

Hernando may not be able to get to the beach anymore, but that didn't stop Donna and their family from bringing the beach to him for their wedding anniversary! Leis and flowers were flown in from Hawaii, festive outfits were donned, and there was even a dove release in honor of their marriage. Donna said that she hopes their story will inspire others to keep hoping and to learn to work around ALS - not give up because of it.

Studies show that people with ALS often experience social withdrawal from family, friends and events occurring outside the home. Patients commonly report that they are less socially attached following diagnosis, including fewer visits from friends. They may describe visits to their doctor or ALS clinic as their most common form of socializing. Low levels of social interaction are related to increased levels of psychological distress in ALS patients. Conversely, high levels of social support are related to increased quality of life for those living with ALS.

That is why having a strong network of friends and family who regularly visit an individual living with ALS is highly beneficial and critically important for the person's wellbeing. Bringing everyone together and sharing in a joyous occasion or an everyday activity helps to keep spirits high and negativity at bay. While it is common for someone living with ALS to feel isolated when he or she is unable to leave the house, Donna and Hernando's story is a great example of how to bring meaningful and joyous experiences to those who need it most.