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
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…
Resources
Haunted by a Gene
For the first time, Nancy Wexler reveals that she has inherited the disease she has spent her life studying.
A clinical trial for Huntington’s opens the door to hope for some patients. Only so many can get in
Huntington’s disease pockmarks family trees. As it slinks through generations, it spares some siblings and afflicts others. The pattern offers a simple yet cruel distillation of the way the variant of a gene we inherit can shape our lives: If you have a parent with the mutation, you have a 50-50 shot of having it, too. If you do, you will develop the disease, and, assuming you don’t die of something else first, its complications will kill you. The disease spoils the brain and brings with it symptoms of Alzheimer’s, Parkinson’s, and ALS, all wrapped up in one. The mutation lies in the HTT gene...
Experimental Drug For Huntington's Disease Jams Malfunctioning Gene
Scientists are gearing up a major study to find out whether a drug can silence the gene that causes a devastating illness called Huntington's disease. This development follows the discovery that the experimental drug reduced levels of the damaged protein that causes this mind-robbing ailment. The new study will determine whether that drug can also stop progression of the disease.
Huntington’s disease may start much earlier than previously thought, before symptoms appear
Our research shows that the mutant Huntingtin gene causes changes on multiple levels, at an age range which has not been previously investigated. It affects gene and protein, nerve cells, and behaviour, too. The prodromal stages – before symptoms appear – in Huntington’s are a window of opportunity for therapies that aim to modify the course of the disease. Currently, however, there is a lack of molecular markers – an indicator of the presence or severity of a disease – that allow researchers to monitor success of treatments.
The Cost of Not Knowing a Huntington’s Diagnosis
Some would-be parents who might have inherited the fatal gene want their doctors to keep secrets—even from them.
A multiple sclerosis drug that works for Huntington's disease: the real deal or too good to be true?
Thinking problems in Huntington’s disease take a huge toll from early in the disease. Now, new work suggests that a drug already approved by the FDA to treat another brain disease – multiple sclerosis – may stave off these problems in HD mice. Could these results be real, or are they too good to be true?
Could a new jaw-dropping breakthrough help treat Huntington's Disease?
Recent days have seen a torrent of news stories about a new technology, called CRISPR, which has been described as having potential application in Huntington’s disease. Is this new technique as cool as it sounds? Possibly — but, as always, the truth is more complicated than the headlines suggest.
Huntington's Disease: An Immune Perspective
Huntington's disease (HD), first discovered by George Huntington in 1872, is an autosomal-dominant inherited progressive neurodegenerative disorder that affects control over movement and cognition along with the development of psychological symptoms.
IBM Researchers' New Approach To Huntington's Could Lead To Significant Breakthrough In Therapy
Huntington’s disease is a fatal genetic disorder that causes a progressive breakdown of the brain’s neurons and afflicts about five to seven people per 100,000. Despite millions of dollars spent over the past two decades to investigate the disease, there’s been little progress in developing a drug or therapy to stop its affects on patients. Most scientists doing research in this field view genes as being responsible for the disease in a direct causative way that goes from the gene to the protein product to a toxic influence on a cell, let’s say a neuron. Researchers at IBM are trying a new approach...
Meet the Disease That Feels Like ALS, Parkinson's and Alzheimer's All at Once
For many, genes are not destiny, but for some, the genetic risks present high enough odds to elicit serious life questions. For others, genes do determine certain health outcomes. One such disease with a determinant gene is Huntington's Disease. Many describe having Huntington's Disease as having ALS, Parkinson's and Alzheimer's all at the same time.
When You Have a Serious Genetic Disease, Who Has the Right to Know?
In a lawsuit issued in 2013, Jane claims that her father’s doctors had a duty to inform her of her father’s diagnosis regardless of his wishes. Had she known she had Huntington’s, Jane says, she would have terminated her pregnancy rather than have a child who was at high risk of both having a life-destroying disease and being raised by a terminally ill single parent.
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.
HOPES
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 jhdkids.com 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.
Enroll-HD
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.
MayoClinic
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.
MedicineNet
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.
MedlinePlus
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.
MovementDisorders.org
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.
NHS
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.
NORD
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.
Patient
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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