The idea and initiative for the charity run came from the family of Professor Thomas Guenther, who was diagnosed with ALS in 2018.
My name is Thomas Günther. I was diagnosed with ALS in 2018.
Here I am picking mushrooms, which is one of my favourite things to do with my family. I had just spotted a porcini mushroom from my electric wheelchair – which I use because now, I can barely walk.
As a result of ALS, movement in general is very difficult. I can no longer move six of my ten fingers.
But I am not complaining. Mentally, I am still fit as a fiddle, and I am fortunate to still be able to work as a professor and teacher, and spend time with my loved ones.
There is still no known cause or cure for ALS, and while it is very distressing for the patient, their relatives and friends also suffer.
Unfortunately, counselling and associated care for relatives of ALS sufferers, and psychosocial support services for patients, are not covered by health insurance.
We hope to change this. I therefore ask for your support and generosity for this enormously valuable task
“ALS” – Three letters that stand for a disease that fills those affected with tremendous fear and anxiousness for what’s to come: the inability to move, speak, care for themselves, with the eventual loss of your independence and ability to fully participate in life. To date, there is no cure for ALS and similar motor neuron diseases.
To be affected by ALS means living with an immense burden – not only for the patients, but also for their families and friends, whose lives must change drastically. While a patient’s loved ones are often the most important source of support, the physical and emotional demands required of a Carer often leads to them not prioritizing their own health and needs.
This is why, in addition to medical care, psychosocial and psychological support for patients, their families, and other relatives plays a crucial role for the overall goal of care: maintaining quality of life, well-being, and the greatest possible autonomy, despite the severe limitations and devastating prognosis brought on by this condition.
However, even though the benefits of easily and quickly accessible psychological support services for those affected by ALS and other motor neuron diseases are widely known, it is not provided for in current care structures, and receives no funding.
For this reason three years ago, we founded a support group with a psychological focus for families at our special outpatient clinic for motor neuron diseases at the University Hospital Dresden (https://als-dd.de/). This group is so important to help the family and friends of ALS patients find support, and to know they are not alone.
We want to continue to offer this important service, as well as expand it, so everyone touched by ALS can receive the support they need.
For this we need your support!
Our team of the special outpatient clinic for motor neuron diseases at the University Hospital Dresden
The proceeds from the charity run will be used to maintain our support group for carers and relatives of ALS sufferers (https://www.als-dd.de/als-angehoerigen-treffen) and to allow the hosting of the ALS discussion groups (https://www.als-dd.de/selbsthilfegruppen) on a regular basis.
We also hope to expand the existing psychosocial support for the patients themselves to include both group events and individual support.
The more donations collected by our generous walking, swimming, cycling and running supporters, the better we can plan and implement these important services for the long-term.
Finally, we aim to spread awareness of the serious gap in care for motor neurone disease patients, and to make a difference for everyone touched by this disease.
Thank you for helping us take action!