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Why I'm Launching a Community Think Tank for People With Neurological Conditions

Sharon E Curtis
Group of hanging lightbulbs with one offset from the others.

I am the mother of a son with multiple neurodevelopmental conditions. My son, aged 9, has high needs and attends a specialist school in Berkshire, one of the three schools in the U.K. who were able to manage his needs and provide him with access to the support therapy and education he needs both now and for the future.

Our family is very grateful that the school exists and our son can benefit from it. For the first time in his education, he is making progress and this will enable him to have a chance of a better future. The process involved meeting with so many healthcare professionals, social care workers, educators and we had to work very collaboratively with all these parties to ensure our son could get the help he needed.

I was frustrated; a lot of the treatments and advice we were given were conflicting and based on a lot of guesswork. Some of the therapies suggested for my son were more damaging than productive. I wasn’t content with the “wonderful things might happen” response from some professionals whilst I had to watch my son deteriorate in front of my eyes as his needs weren’t being met.

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I spoke to family after family and others with similar conditions about their experiences and found similar stories — frightening stories from suicidal children not being able to access mental health care, and adults with PTSD from the therapies they had experienced as a child to “cure” their conditions. I found children being excluded from schools because their sensory needs and emotional regulation needs had not been met.

Many of the people I spoke to had not just one condition but a combination that made up their own complex neurology. Meeting the needs of that unique neurology was so difficult because the brain is still not well understood. There is a view that it’s almost impossible to get the right treatment for people with complex conditions. I wanted to challenge that assumption. Whilst I accept it is complicated, I wanted to look at ways we can use technology to find out more about our neurology and create solutions for people with neurological conditions to live better lives.

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In June 2019 I launched Technology for Good, a site that creates and shares technology ideas that can help people with neurological conditions. We cover technology that is available already and technology that could be of help in the future. As part of this initiative, we are launching a Community Think Tank to innovate and create solutions that can help people with neurological conditions. The Community Think Tank is made up of a diverse group of people. Critically, it will include people who have neurological conditions and have direct experience of the challenges they face. We will also involve experts, technologists, creatives, educators, carers and entrepreneurs. It will be a forum for people to get together to solve complex challenges and obtain funding for projects aligned with the  think tank’s mission.

The Community Think Tank will be looking at technology to help someone with a neurological condition live more independently, access employment, their community, find out more about their condition and get access to treatment and diagnosis more quickly and easily.

Related:How Unconscious Bias Affects People on the Autism Spectrum

We welcome all to take part in our innovation by joining our Community Think Tank group. We will be hosting our Community Think Tank launch on February 5, 2020 at the Microsoft Reactor in London. It’s free to attend. During the year we will be running a series of events and product hacks to test ideas and launch projects. We hope you can be a part of innovation for people with neurological conditions in 2020.

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