Global ALS Day of Remembrance
The nerve disease ALS takes the lives of 100,000 people worldwide every year. In Switzerland, around 700 people are affected by the fatal disease. On June 21, ALS organizations globally draw attention to this fact. This is also the case with the ALS Switzerland association, which has been supporting those affected and their relatives since 2007.
ALS (Amyotrophic Lateral Sclerosis) is a rare disease of the central and peripheral nervous system that is fatal. Usually within a few years after the first symptoms. Worldwide, there are 400,000 ALS sufferers; in Switzerland, approximately 700 people are affected by ALS. The causes of Disease have not yet been deciphered despite international research. ALS gains public interest when a prominent person dies from the disease. Such as the astrophysicist Stephen Hawking (2018), the actor Sam Shepard (2017) or the professional footballer Krysztof Nowak (2005). Now, on June 21, ALS organizations around the globe are drawing attention to those ALS sufferers whose fate mostly goes unnoticed: People like you and me.
Motto of the action: #ALSMNDWithoutBorders (MND: Motor Neurone Disease, English name for ALS).
Drawing attention to unnoticed fates
Daniela Schneider-Spellecchia and Dennis Schneider are an example of a fate that remains hidden from the public eye. Despite Dennis' ALS diagnosis, they married and started a family. Daniela says in the 2018 annual report of the ALS Switzerland association that her husband has a terminal illness, but he is not terminally ill. Most ALS sufferers (90 percent) are the only cases in their family, yet the couple wanted to be sure and had tests done to see if Dennis would be able to inherit the disease. They also had the course of the disease examined before starting a family, because ALS sufferers usually die three to five years after the first symptoms. The research showed that Dennis would have a longer life expectancy than is usual with ALS. When asked if a terminal illness brings a focus to life, Dennis Schneider says, "We're all mortal. But it certainly makes you more aware." Meanwhile, daughter Melissa is 4 years old, and the young family is going their very own way.
ALS Switzerland Association
The association ALS Switzerland supports people with Amyotrophic Lateral Sclerosis (ALS) and their relatives. Our offers are in particular:
- ALS Care: Personal counseling and support by trained ALS Care Nurses.
- Financial assistance in emergency situations.
- Loan of professionally maintained tools.
- Parallel meetings for affected persons and relatives with experts.
- Vacation week for affected persons and accompanying persons in Ticino.
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