On 24th March, the first ever Kennedy?s Disease Day ? specifically for people living with Kennedy?s Disease, their families and carers, together with researchers and healthcare professionals took place in Derby.??
The day was run by UCL, the MND Association and UK Kennedy?s Disease. UCL run the Kennedy?s Disease Clinic and research into the disease at the Institute of Neurology, Queens Square, London.??
Kennedy?s Disease is supported by the MND Association. It is a slowly progressive degenerative disease of the motor neurons and has many symptoms that people with MND would recognise, together with some they wouldn?t. It causes mobility, swallowing and speech problems as well as breathing problems.??
The day was all about explaining the research that is currently going on, the support available from the clinic, the work of the MND Association and specifically MND Campaigns and how the charity Kennedy?s Disease UK are raising money for research into the disease.?
Katy Styles addressed the audience, which?was believed to have the?largest number of people living with Kennedy?s Disease present at one time, anywhere in the world. She spoke about how the Association currently supports people living with Kennedy?s Disease, through the work of branches and groups, through support grants, the work of MND Education, publications available and how MND Campaigns had made a big impact on getting more decision makers to understand what life was like for people living with KD. UK Kennedy?s Disease founder Kate Hopps also spoke about their fundraising work and Eric Mager, spoke about the Facebook Group he had set up to support people with KD and their families ? KDRA.??
Everyone came away from the day determined that this would become an annual event and thinking how they could now get involved with fundraising and campaigning to raise awareness of this disease.??
Thanks?to the MND Association for helping support this day.??
More about Kennedy?s Disease UK can be found here.??