In July 2022 our world was turned upside down when my husband Daniel Johnston received the news that he has inherited the Huntington's gene and will therefore develop Huntingdon's disease.

On 27 May, Katie and I will walk 100km continuously from London to Brighton.  We are walking to raise money for the Huntingdon's Disease Association.

Huntington's disease is a rare, inherited, degenerative disease that stops part of the brain working over time.  It get gradually worse and is usually fatal after a period of up to 20 years.  There is no cure and no treatment to slow down progression which is why donations to help research are vital.

Since receiving the diagnosis, Dan has experience severe depression and anxiety and has had to take some time out of work.  There is no way of knowing if these mental health symptoms are early signs of the disease or bought on by the trauma of receiving such a devastating diagnosis.

The Huntington's Disease Association has been a continuous source of support for Dan and I since receiving the diagnosis. They pursue the best possible care; provide training & advice to families and professionals; raise awareness, and promote research towards better treatment and care.

If you want to know about Huntington's, please take a look at the HDA website:

https://www.hda.org.uk/huntingtons-disease/what-is-huntingtons-disease

Thank you for taking the time to read our story.