HD Focus: News Across the Globe

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.

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.

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

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

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 […]

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.

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.

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

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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.

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 […]

The groundbreaking course ‘Huntington’s disease: an enabling approach to supporting families’ is open for applications from practitioners involved in the care and support of people and families impacted by Huntington’s disease. The short course aims to develop greater understanding of Huntington’s disease and its impact on the people and families

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The post Huntington’s disease university module opens for applications from practitioners appeared first on Scottish Huntington's Association.

Good luck to full-time carer Taylor Graham who is returning to the Edinburgh Fringe with his new charity stand-up show in support of people with Huntington’s disease and their loved ones. This year the 25-year-old from Edinburgh will be at the Counting House (Fringe venue 170) where he will joined

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The post Taylor returns to Fringe with stand-up show in support of Scottish Huntington’s Association appeared first on Scottish Huntington's Association.

Il IV° Ciclo MINDFULNESS-BASED promosso dalla nostra Associazione per le persone coinvolte dalla malattia di Huntington, inizia mercoledì 4 ottobre alle ore 18. « Se … Scopri di più

L'articolo Percorso MINDFULNESS-BASED per le famiglie Huntington sembra essere il primo su Huntington Onlus.

L’Assemblea di Huntington Onlus è programmata per sabato 23 settembre c.a. alle ore 10.00, in modalità mista, così da facilitare la partecipazione di tutti gli … Scopri di più

L'articolo Assemblea dei Soci: sabato 23 settembre sembra essere il primo su Huntington Onlus.

New York, NY / London, UK, July, 12th 2023; The Huntington’s Disease Imaging Harmonization (HD-IH) Consortium, founded last year to conduct an unprecedented harmonization analysis of more than 6,000 participant-visit magnetic resonance images (MRIs) acquired from over 2,000 research participants, has now completed the initial phase and secured the necessary funding commitment to complete the […]