Huntington's Disease

In a life of uncertainty, There's one thing I'm sure, One day, some day, There will be a cure - Rylee

Huntington's Disease
Huntington's Disease

image by: HDSA's National Youth Alliance - NYA

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Huntington's Disease Poem


She tried to hide it,
But it didn't take long
Before I began to notice
That something was wrong.

I was still young,
So I didn't understand
What could be causing
The tremors in her hand

I was confused
And I didn't know why
Dropping something
Would cause her to cry

Is this my fault?
Is it something I did?
I thought it was because
I was a bad kid

Year after year
I saw her get worse
It's painful to watch
The disease take its course

Sometimes she'd get snappy
She would be hard to please
I had…

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 Huntington's Disease Poem

Hi, my name is Rylee and I'm 15 years old and my mom has HD. I've read a lot of the posts on this site, but I've never posted anything before. Here is a poem I wrote, about my Mom and my experience living with HD in the family.

HD Buzz

Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.

CHDI Foundation

CHDI Foundation is a privately-funded, not-for-profit biomedical research organization devoted to a single disease – Huntington’s disease. Our mission is to develop drugs that will slow the progression of Huntington’s disease and provide meaningful clinical benefit to patients as quickly as possible.

HD Free With PGD

Yes, you can stop Huntington's Disease in the future generations of your family! With the help of skilled medical professionals, YOU have the ability to prevent your children from inheriting HD.

HDSA National Youth Alliance

HDSA’s National Youth Alliance (NYA) motivates youth to get involved in their local HDSA Chapters, Affiliates, and Support Groups in efforts through education, fundraising, advocacy and awareness for Huntington’s disease. The NYA is a collection of children, teens and young adults from across the country.

Hereditary Disease Foundation

The Hereditary Disease Foundation focuses on curing Huntington’s disease (HD), a genetic brain disorder caused by a mistake in a single gene. This mistake is the same in all families worldwide with HD, so treatments and cures are expected to benefit everyone with the disease worldwide.


About HOPES is a team of faculty and undergraduate students at Stanford University dedicated to making scientific information about Huntington’s disease (HD) more readily accessible to the public. Our goal is to survey the rapidly growing scientific literature on HD and to present this information in a web source.

Huntington's Disease Drug Works

Huntington's Disease Drug Works (HDDW) founded by LaVonne and Nathan Goodman in 2004 has evolved over the years. At present the focus is providing information on present treatment options for Huntington's disease that include...

Huntington's Disease Lighthouse Families

For HD families...By HD families.

Huntington’s Disease Association

Hunting for a cure, with care

Huntington’s Disease Youth Organization

The Huntington’s Disease Youth Organization is an international non-profit organization set up to specifically provide support for young people around the world impacted by Huntington’s disease.

International Huntington Association

The International Huntington Association (IHA) is a federation of national voluntary health agencies that share common concern for individuals with Huntington's Disease (HD) and their families. Each agency promotes lay and professional education; individual and family support; psycho-social, clinical and biomedical research; and ethical and legal considerations related to Huntington's Disease in its respective country.

JHD Initiative

Welcome To Where You Can Read These Kids Stories And Learn More About JHD And How Different It Is In Kids Than Adults.

Young People Affected by Huntington Disease

Young People Affected by Huntington Disease—a chapter of the Huntington's Society of Canada (HSC) composed of young people from across Canada.


The goal of Enroll-HD is to accelerate the discovery and development of new therapeutics for HD.

European Huntington's Disease Network

On this website you find information about the EHDN project (objectives, organisation, people activities on executive committee, central coordination and language coordination, working groups, etc), sponsor of EHDN, participating study sites and ongoing studies (REGISTRY and Enroll-HD).

Huntington Society of Canada

The Huntington Society of Canada is a not-for-profit charitable organization which raises funds to deliver individual and group counselling service to support individuals and families living with Huntington disease (HD) and to fund medical research to delay or stop the progression of the disease. The Society also works with health and social services professionals to enable them to better serve people living with HD.

Huntington's Association of South Africa

HASA was originally created to raise funds for Huntington's Disease (HD) sufferers and their families by establishing and managing an information centre and funding relevant research and clinical trials towards finding a cure.

Huntington's Disease Society of America

The Huntington's Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with Huntington’s disease and their families.

Huntington's Victoria

We aim to improve the quality of life of all people touched by HD in Victoria by connecting families to the vital support and services they need, while supporting people affected by HD to live meaningful and hopeful lives as valued members of the community.

Huntington's WA

Huntington's WA provides a state-wide service to improve the quality of life for people with Huntington's disease, their carers and families through advocacy, support and education with the aim of empowering those who are impacted to meet the extraordinary challenges they face.

Scottish Huntington’s Association

Scottish Huntington’s Association (SHA) is a Scottish charity that was established by families living with Huntington’s disease (HD) in the late 1980s. Experiencing directly the dearth of services available to them, the organisation pursued the goal of setting up specialist family support services and this ultimately blossomed into the development of an extensive network of specialist services.


Most people with Huntington's disease develop signs and symptoms in their 30s or 40s, but the onset of disease may be earlier or later in life. When disease onset begins before age 20, the condition is called juvenile Huntington's disease. Earlier onset often results in a somewhat different presentation of symptoms and faster disease progression.


Huntington's disease (HD) is a complex disorder that affect's a person's ability to feel, think, and move. Symptoms tend to worsen over time and the disease often runs in families. In people with one parent with HD, the chances of them developing it are 50-50.


Huntington's disease (HD) is an inherited disease that causes certain nerve cells in the brain to waste away. People are born with the defective gene, but symptoms usually don't appear until middle age. Early symptoms of HD may include uncontrolled movements, clumsiness, and balance problems. Later, HD can take away the ability to walk, talk, and swallow. Some people stop recognizing family members. Others are aware of their environment and are able to express emotions.

Huntington’s disease is clinically characterized by a triad of motor, cognitive and psychiatric symptoms. Motor features include: impairment of involuntary (chorea) and voluntary movements; reduced manual dexterity, slurred speech, swallowing difficulties, balance problems and falls.

National Institute of Neurological Disorders and Stroke

There is no treatment that can stop or reverse the course of HD. Tetrabenazine is prescribed for treating Huntington’s-associated chorea.


Huntington's disease was originally called Huntington's chorea ("chorea" is the Greek word for dancing). This is because the involuntary movements associated with the condition can look like jerky dancing. However, "disease" is now the preferred term, because the condition involves a lot more than just abnormal movements. Huntington's disease is caused by an inherited faulty gene. However, in around 3% of cases, there's no family history of the condition, normally because the parents died at a young age.


Huntington’s disease runs a ten to 25 year progressive course. As the disorder progresses, the chorea may subside and there may be an absence of movement (akinesia). Dementia gradually develops. Patients with Huntington’s disease are at high risk of developing pneumonia as a result of being bedridden and undernourished.


Huntington's disease is associated with cell loss within the basal ganglia and cortex. It is an autosomal-dominant, progressive neurodegenerative disorder with a distinct phenotype, including chorea and dystonia, inco-ordination, cognitive decline, and behavioural difficulties. Huntington's disease was first described by George Huntington in 1872. The disease is associated with increases in the length of a cysteine-adenosine-guanine (CAG) triplet repeat present in a gene called 'huntingtin' located on chromosome 4p16.3.

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