This page is filled with resources designed to help various needs. There are different sections including helpful websites, free downloadable documents and signposting to charities that can provide support and advice.

Free downloadable documents:

Campaign For My Brain’s “HD & Me” – a personal profile all about how Huntington’s affects you as an individual.

Campaign For My Brain’s “All About My Brain” – a personal profile all about how your neurological condition affects you as an individual.

Motor Neurone Disease Association “Understanding My Needs”:

PSP ‘All About Me’ Document: file:///C:/Users/Emma%20Davis/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/All-about-Me-web-excl-guidance-notes.pdf

Alzheimer’s Society ‘This Is Me’ document:

Hospital Passport NHS Document for individuals with Learning Disabilities:

Headway Brain Injury have a card you can use to identify your needs quickly in an emergency.

Huntington’s disease:

Huntington’s Disease Association

Huntingon’s Disease Youth Organisation

Melanie cared for her brother Nick, who sadly passed from Huntington’s disease earlier this year. She is a beautiful writer, and writes raw blogs about being a carer, unpaid, and about the grief that follows when you are no longer a carer.

A blog created by someone who has a Dad positive with HD, and a Nan. She shares the journey of hers, and will be posting up to date research and information to raise awareness. On Instagram : @youmeandhd

This is a blog that a lady has started following her Husband’s diagnosis of Huntingtin’s Disease. The latest post focuses on their participation in clinical trials.

I’m Not Drunk: Lifestyle blog. A young carer’s blog about her Dad’s life with Huntington’s Disease.

Michael’s wife has had Huntington’s disease for 11 years, and is in advanced stages. He blogs about grief to try and help others come to terms with it.

Advice from the Huntington’s Disease Association on genetic testing for HD:

Family planning advice for those at risk of Huntington’s Disease:

Huntington’s Disease Youth Organisation offer a range of pages for young children, teenagers, adults, parents, and also information on Juvenile Huntington’s Disease. There are interactive resources for children to get them engaged

Parkinson’s disease:

Parkinson’s Disease initiative to raise awareness and provide vital information of new ways to help those suffering from Parkinson’s Disease

Parkinson’s Society UK

Motor neurone disease:

Pain in the ‘ALS’: One Man’s journey with Motor Neurone Disease

MND Association

Understanding my needs document from the MND Association, helps you to document your needs in one place. and you can find it in the Forms to help you communicate your needs drop down at:

Multiple Sclerosis:

Overcoming MS – A charity that advocate using a positive evidenced based lifestyle, to manage MS and improve symptoms and well being! Check them out

MS Society UK


Alzheimer’s Society

Dementia Carers Charity

A charity specifically for those with dementia under 65 years old

Information on neurological diseases:

Genetic Alliance UK

Disabled World: A to Z of Neurological Diseases

National Organisation For Rare Disorders

Support avenues:

The Samaritans

Carers UK

Public Health campaign ‘We are Undefeatable’, the aim is to encourage people with long term conditions to be more active, with lots of tips and testimonials

Care advice:

NHS England: Continuing Healthcare Funding

Care to be different: Resource on NHS Healthcare funding

Government information on the responsibilities of local authorities within the Care Act:

Resources for genetic testing:

NHS advice on genetic testing:

Advice from the Genetic Alliance on Pre-implantation Genetic Diagnosis:

Resources for young people:

Gloucestershire Young Carers

The Honeypot Children’s Charity offers both respite breaks and outreach support to young carers and vulnerable children, many of whom would otherwise have nowhere to turn

This charity raise awareness of their needs, campaign for policy change, support schools, and work to see that these young people get the future and support they deserve

‘Kids’ charity provide support to young carers under the age of 18, whose lives are restricted in some way because they are supporting a person who is ill, has a disability, mental illness or misusing a substance.  This could include a parent, sibling or close family member. This allows the young carer to take time out for themselves, socialise and cope with the demands placed on them as carers

Resources for professionals or employed carers:

‘Understanding Neurology’ e-learning course – This was created by the Essex Neurology Network for health and social care practitioners (throughout the UK) who provide services and support for people affected by neurological conditions. The course provides insight into what it is like to live with a neurological condition including brain injury, epilepsy, multiple sclerosis, motor neurone disease, Huntington’s disease, Parkinson’s, Progressive Supranuclear Palsy and stroke. Available at:

Huntington’s Disease Association resources for professionals

Epilepsy UK resources for professionals

Parkinson’s UK resources for professionals

Progressive Supranuclear Palsy Association resources for professionals


Here a few charities, some of which you may already know. If you are early in your journey, don’t underestimate the positive impact and support that a charity can provide.

***If you know of a charity, please email me and I will add it on!***

PSP Association

MSA Trust

Alzheimer’s Society

Cerebral Palsy

Brain Injury Association UK

The Brain Charity

Stroke Association