IWD 2022: Yvonne Milne MBE - working for Rett UK 37 years on!

I am Founder and President of Rett UK. I live in Worcestershire and I am Mother to Clare, who is 41 years old, who has Rett syndrome. My background is in hospitality and business management. I have also worked in marketing and been a lecturer in higher education. When Clare was diagnosed in 1985, (she was one of the first in the UK to have the diagnosis for this newly recognised disorder) I was told that there was no cure for her so I directed my energies to creating a charity that could improve the quality of life, support the families of all those affected and find out what we could do. These were very early days in knowledge about the disorder and the future looked very uncertain. Our lives changed with the diagnosis; I abandoned my career, using my experience and skills to work in the charity sector, both locally and internationally for Rett syndrome, rare diseases and disability in general. I was awarded the MBE for services to health in 1997, which I feel is recognition for the work and teamwork of all the inspirational people I have worked with over the years

Rett syndrome is a complex neurological disorder that can occur in any family and affects approximately 1 in 10,000 girls born each year, rarely affecting boys. Almost all people with Rett syndrome have no history of the disorder in their family and the mutation has happened spontaneously. Genetic, it is present from conception but remains undetected until major regression occurs at around one year of age, when acquired skills are lost and other clinical features are manifested. Those affected often have profound and multiply physical and communication disabilities and are totall reliant on others for support throughout their lives

I have been totally driven and inspired to devote my life to the Rett cause from the minute I heard the words Rett syndrome in 1985! There was then, and still is, a great task ahead, to increase awareness, support all those affected, promote research and much much more!

People can help in so many ways. Those who are close to a family can be an essential support network both in practical ways and also volunteering, perhaps in fundraising (Rett UK gets no government funding) for all the important work carried out by Rett UK, who are totally committed to their mission