Parkinson's UK: Pushing the Search for a Cure to New Levels

Abstract

Every hour, someone in the UK is told they have Parkinson’s disease. Becausewe are here, no one has to face Parkinson’s alone. We bring people with Parkinson’s, their caregivers, and their families together via our network of local groups, our website, and our free confidential helpline. Specialist nurses, our supporters, and staff provide information and training on every aspect of Parkinson’s. As the UK’s Parkinson’s support and research charity, we are leading the work to find a cure, andwe are closer than ever.We also campaign to change attitudes and demand better services. Parkinson’s UK’s fight against the disease began in 1969 when Mali Jenkins founded the Parkinson’s Disease Society. Her sister, Sarah Jenkins, had been living with Parkinson’s for some years and was cared for at the family home. Mali looked for patient associations to help people affected by Parkinson’s, but searches of local libraries showed that no such thing existed. Frustrated to find no literature in layman’s terms about her sister’s condition, Mali decided to find outwhat she could about Parkinson’s. She placed advertisements in the personal columns of a couple of newspapers asking people to come forward who were interested in forming an exploratory steering group. Mali chaired the committee, and her sister, Eryl, was secretary. Other friends and family were asked to help. The first meeting took place at Westminster Hospital with just 16 people in attendance. But that event spawned the idea for a national charity dedicated to helping Parkinson’s patients and their caregivers—the Parkinson’s Disease Society, which officially began on February 26, 1969. Today, the organization has grown to include 350 groups spread across the UK dedicated to offering friendship and support to everyone affected by Parkinson’s. In 2010 we changed our name to Parkinson’s UK to reflect our expanded mission, which includes funding research aimed at finding a cure. Alongwith being at the forefront of developing induced pluripotent stem (iPS) cells, Parkinson’s UK has played a key role in campaigning for the implementation of legislation to allow stem cell research to be carried out within the UK, including the 2001 amendment by the British Parliament to the Human Fertilisation and Embryology Act 1990. We also campaigned in 2009 for legislation to allow for the use of cytoplasmic hybrid embryonic stem cells.We aremembers of the UK Stem Cell Funders Forum, which monitors developments in stem cell technology and ensures that the legislation is appropriate for these technologies to develop.