To commemorate Global Motor Neurone Awareness Day, the Gauteng Motor Neuron Disease (MND) Association hosted an event to raise funds and awareness.
The event, which was hosted in Bryanston on 21 June, coincided with the winter solstice, which represents a turning point in the year, and the association hopes that this will also signify a turning point in the search for the cause, treatment and cure for the disease.
Karen Soderholm organised the event to help raise money for those who cannot afford the necessary medical equipment, as well as to raise awareness for the need for corporates to be more accessible to those in wheelchairs.
MND is a neurodegenerative disease which causes the nerves in the brain and spine to progressively lose function. It can progress very quickly and wheelchairs and breathing apparatus are essential. This equipment, however, is very expensive and the association aims to help those who cannot afford it.
Soderholm’s husband, Goran, was diagnosed with the disease almost exactly two years ago. Karen said that she wanted to do something because there is such a lack of awareness about the disease. She added that the event is not intended to focus on the disease specifically but rather to encourage hope and positivity.
“I think people don’t realise that we have absolutely no idea how people get it and they don’t realise how dramatically fast it progresses. You could not see someone for three weeks and suddenly they can’t walk. So I think people are quite horrified but also amazed at what it does to a family and how profoundly it affects your life.”
She added that while it might seem odd, it has brought out so many good things in people. “In my family, the youngsters especially, really appreciate our family time, appreciate doing things now rather than later because you might not get that chance.”
Physiotherapist and mindfulness coach, Sue Fuller-Good shared stories of challenging life experiences she has overcome. Fuller-Good cycled through the Danakil Desert in Ethiopia, often referred to as the gates of hell, and shared the experience to help others overcome the obstacles they face.
Victoria Goodstein, the Gauteng MND Advisor, said that they lend out medical equipment to people as they need it, however, it is in high demand and very expensive. Goodstein added that monthly support groups offer family and friends support and advice and help forge many strong friendships.
Details: Motor Neuron Disease (MND) Association 021 531 6130.
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