George Barclay

[p][b]The LSP Team are cycling to Lapland (figuratively!) to raise money for Huntington's Disease Association![/b][/p][p]On 1 October, the LSP team will embark on a 2,233 mile trip to Lapland in time for Christmas to raise money and awareness for iC1's Huntington's Disease Association. The HDA team work tirelessly to fund research into finding a cure for the degenerative disease and we will be digging out the exercise bikes to do our small part to help them. The trip will take us up until the week before Christmas and we are asking the LSP Community for their help, either by donating to the cause or by chipping in with a few miles of cycling. [/p][p]A little more about HDA from the team at HDA;[/p][p]"We are the [u]only[/u] charity working across England and Wales for people affected by Huntington’s Disease, also called HD. [/p][p]HD is a disease of the central nervous system. Caused by a faulty gene, HD affects around 6,000 people in the UK. Because there is no official register for HD, this number could be nearer 10,000. [/p][p]HD is complex and affects people differently. People with HD can struggle with balance, co-ordination, speech and movement. HD can change their moods and behaviours – symptoms can include severe depression and paranoia. People with HD can have difficulty with chewing and swallowing, causing dangerous weight loss. They can struggle to create a chain of thought and express themselves. HD changes the whole person and becomes completely disabling. Simple things, such as having a cup of tea and a chat, can become impossible. [/p][p]The symptoms of HD usually begin between the ages of 30 and 50 and endure for 15 – 20 years. As the disease progresses, the person needs increasing levels of help with simple daily tasks.[/p][p]Eventually, the person will need constant care. HD is terminal. There is no remission. There is no cure [/p][p]HD is passed from parent to child. Every child of a person with HD has a 50% chance of having HD. If they test positive for the faulty gene, they will develop symptoms; HD never skips a generation. [/p][p]This means that many families have two or more members with HD at the same time. It can mean that a person caring for a relative is also at risk of the disease – and that their children are too. For every person diagnosed another four are at risk of HD. [/p][p][b]About our Specialist Huntington’s Disease Advisory Service [/b][/p][p]People with HD are some of the most vulnerable in our society. As the disease progresses, a person with HD will lose their independence. They may lose their job and become increasingly isolated. Thoughts of suicide are common. [/p][p]Marriages and families are put under extreme pressure. This is made worse because of the hidden nature of HD – there is still a stigma attached to the disease and often misdiagnosis. Because of the impact on parents and relatives, children in HD families can face neglect or abuse. Severe behavioural changes can lead to offending and imprisonment for some people with HD. [/p][p]Families can easily end up in crisis.[/p][p]A lifeline for the HD community, our Specialist Huntington’s Disease Advisory Service (SHDA) is here to help. Designed in consultation with the HD community, the service is tailored to individual needs. [/p][p]Our Advisers are expert care management professionals. They bring previous experience as nurses, occupational therapists and social care workers. Each of our 23 Advisers covers a dedicated geographical area within England or Wales. We are the [u]only[/u] HD association in the world with a Specialist Juvenile HD Adviser, supporting families through this rare early onset of the disease. [/p][p]Our Advisers [b][i]support, educate and empower[/i][/b]. [/p][p][b]Support[/b][/p][p]Our Advisers help people living with HD to get the best possible care and access available services. They do this through home visits and by co-ordinating activity with health and social care professionals, such as speech and language therapists, physiotherapists and specialist clinicians. They wrap the best package of care and support around the person living with HD. [/p][p]The Advisers also deliver our confidential telephone helpline service. People call us needing advice, struggling to cope, or in crisis. [/p][p]Importantly, Advisers provide practical and emotional support for sensitive end-of-life care, during this distressing time for families.[/p][p][b]Educate [/b][/p][p]Because it is rare, many healthcare professionals have limited knowledge of HD. Advisers train medical, health and social care professionals in all aspects of the disease including symptoms, behaviour management and palliative care. This increases knowledge and understanding, meaning better diagnosis and care for people with HD. [/p][p][b]Empower [/b][/p][p]The amazing HD community is at the heart of everything we do. Advisers attend local branch and peer support group meetings, and run carers events – including pop-up cafés in more rural areas. This helps to reduce isolation and feelings of helplessness for carers, including young carers. We currently have 30 local branches and 29 support groups."[/p][vmgvideo class="ql-video" frameborder="0" allowfullscreen="true" src="https://player.vimeo.com/video/288721508/"][/vmgvideo][p][br][/p]