HD Focus

News Across the Globe

National Inclusion Week

HDA - UK

Family Gathering and AGM – registration opens to Huntington’s community

Scottish Huntington's Association

This year’s Family Gathering and AGM will take place on Saturday 4 November at DoubleTree by Hilton Dunblane Hydro, Perth Road, Dunblane. It is open to everyone whose life is impacted by Huntington’s disease, including those who have the disease or are at risk of developing it, carers and loved

Read More

The post Family Gathering and AGM – registration opens to Huntington’s community appeared first on Scottish Huntington's Association.

John goes for 1.5million steps in 100-day walking challenge

Scottish Huntington's Association

Lanarkshire accountant John Moffat has taken on a whole new counting challenge that will see him do more than 1.5 million steps for families impacted by Huntington’s disease. The 55-year-old Chief Executive Officer and colleagues at Benson Wood + Co in Bellshill have been inspired to support Scottish Huntington’s Association

Read More

The post John goes for 1.5million steps in 100-day walking challenge appeared first on Scottish Huntington's Association.

Write to your MP for Mental Health Day

HDA - UK

Tipping the balance; new insights into HD genetic modifiers

HDBuzz (English)

Genetic modifiers can influence when HD symptoms begin. Some of these genes encode for different types of molecular machines whose normal job is to repair our DNA when it is broken or damaged. A recently published study from scientists at Thomas Jefferson University uncovers details of how these molecular machines help repair damaged DNA structures that can occur in HD, revealing a complicated balancing act.

In this article, we explore what the scientists found, how this can help us understand how different modifiers work to alter the path of HD, and ways these new insights might guide development of new therapies.

Genetic modifiers of HD change the age at which symptoms appear

Every case of HD is caused by the same genetic change, the extension of a long stretch of the letters “CAG” in the Huntingtin gene. An intriguing mystery in HD research has been the fact that folks with the exact same CAG number can often start to get symptoms at very different ages.

Lista Impronta familiare – Assemblea dei Soci

Huntington Onlus

È in programma per sabato 23 settembre l’Assemblea degli Associati di Huntington Onlus La rete italiana della malattia di Huntington. All’ordine del giorno, tra gli Scopri di più

L'articolo Lista Impronta familiare – Assemblea dei Soci sembra essere il primo su Huntington Onlus.

Social cognition in Huntington's disease

HDA - UK

Get involved in research studies

HDA - UK

Guarantee our essentials

HDA - UK

Drug to treat movement symptoms of HD approved by FDA

HDBuzz (English)

The vast majority of people with Huntington’s disease experience movement symptoms known as chorea. Valbenazine, also known as INGREZZA, has recently been approved by the United States Food and Drug Administration (FDA), allowing doctors in the USA to prescribe this medicine for Huntington’s disease (HD) chorea. In this article we go through the key points of this announcement and what it means for HD family members.

Background on valbenazine

INGREZZA is the trade name of valbenazine, a drug developed by the company Neurocrine Biosciences. It works similarly to tetrabenazine and deutetrabenazine (Austedo), drugs commonly prescribed to help control the involuntary twitching or jerking movements that people with HD experience.

Meet the speakers at this year's Huntington's Community Conference and AGM

HDA - UK

Liam’s determination inspires whole family to get involved

Scottish Huntington's Association

When civil servant Liam Anderson signed up for the London Marathon in support of the Huntington’s community, he had no idea how much it would inspire his own family. The 31-year-old tried unsuccessfully for 10 years to win a ballot place in the world-famous run – then Scottish Huntington’s Association

Read More

The post Liam’s determination inspires whole family to get involved appeared first on Scottish Huntington's Association.

Conference Details

CHDI Foundation

Postcard from Dubrovnik 2023

CHDI Foundation

The Postcards are a series of short videos aimed at non-scientists that convey the major themes, scientific breakthroughs, and clinical trial updates from each year’s Huntington’s Disease Therapeutics Conference held (most usually) in Palm Springs, California; this year’s conference was held in Dubrovnik, Croatia, to encourage more European colleagues to participate in person. Beginning in […]

Youthful competitors: young brain cells oust the old

HDBuzz (English)

When you lose something, an easy solution can be to just replace it. But what if the something you’ve lost are cells in the brain? Can they simply be replaced? Some researchers have been working toward this for Huntington’s disease (HD) by injecting new cells into the brains of animal models. A recent publication that has garnered a lot of press looked at the effects of replacing cells in the brains of mice that model HD - with surprising findings. The work draws attention to a less well-known type of cell and could inform future studies.

The brain’s supporting cast

Neurons are one of many types of cells in the brain. They get a lot of attention in Huntington’s disease (HD), and rightfully so! Neurons are the cell type most affected by HD. They’re the ones that are shaped like a tree, with branches coming out the top, a long trunk, and roots at the bottom. This cell type transmits signals to help us think, feel, and move. We see neurons die over time in HD. But they’re not the only type of cell in the brain affected by HD.

Tra Scienza e Vita

Huntington Onlus

Spesso, nelle parole di chi incontriamo, di chi ci scrive, di chi sentiamo al telefono, veleggia una “una stanchezza della speranza”. Le persone coinvolte dalla Scopri di più

L'articolo Tra Scienza e Vita sembra essere il primo su Huntington Onlus.

A postcard from Dubrovnik

HDA - UK

Patron welcomes impact of summer camp: “We’re now seeing young people who can talk about Huntington’s disease”

Scottish Huntington's Association

What an amazing time was had at the 2023 Summer Camp! This year we were joined at Lagganlia Outdoor Centre near Aviemore by 45 young people from across Scotland, our Patron Sarah Winckless, Chair of Trustees Cat Martin and Chief Executive Alistair Haw. And our Youth Service team made sure

Read More

The post Patron welcomes impact of summer camp: “We’re now seeing young people who can talk about Huntington’s disease” appeared first on Scottish Huntington's Association.

Huntington Study Group and CHDI Foundation collaborate on Enroll-HD

CHDI Foundation

Rochester and New York City, New York, July 25, 2023 – HSG Clinical Research, Inc.—the Huntington Study Group’s clinical research organization (CRO) and wholly owned subsidiary (collectively referred to here as HSG)—has begun providing CRO services for CHDI Foundation’s Enroll-HD observational study and clinical research platform in the USA and Canada. “CHDI has long supported […]

Annual fundraising survey

HDA - UK