HD News

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

15 September, 2023

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

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

Tipping the balance; new insights into HD genetic modifiers

1 September, 2023

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

Lista Impronta familiare – Assemblea dei Soci

1 September, 2023

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.

Drug to treat movement symptoms of HD approved by FDA

22 August, 2023

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.

Liam’s determination inspires whole family to get involved

11 August, 2023

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

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

Conference Details

10 August, 2023

CHDI Foundation

Postcard from Dubrovnik 2023

10 August, 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

8 August, 2023

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

Tra Scienza e Vita

7 August, 2023

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.

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

3 August, 2023

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

Huntington Study Group and CHDI Foundation collaborate on Enroll-HD

25 July, 2023

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 […]

Huntington’s disease university module opens for applications from practitioners

13 July, 2023

Scottish Huntington's Association

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

Taylor returns to Fringe with stand-up show in support of Scottish Huntington’s Association

13 July, 2023

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

Percorso MINDFULNESS-BASED per le famiglie Huntington

12 July, 2023

Huntington Onlus

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.

Assemblea dei Soci: sabato 23 settembre

12 July, 2023

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.

Huntington’s Disease Image Harmonization Consortium secures new member and funding to complete large-scale analysis of brain changes using IXIQ.Ai

12 July, 2023

CHDI Foundation

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 […]

Autorally avontuur 3 september 2023

27 June, 2023

Nieuws - Vereniging van Huntington

ZIN IN EEN AUTORALLY AVONTUUR? STEUN HET GOEDE DOEL HUNTINGTON!

DOE MEE, LAAT JOUW MOTOR BRULLEN VOOR HUNTINGTON!

Stap in, geef gas en maak je klaar voor een avontuur op wielen!

Grijp deze kans om misschien wel voor het eerst in je leven mee te doen aan een autorallly.

Deze rally gaat verder dan alleen maar plezier maken.

Update PTC over PIVOT-HD trial

26 June, 2023

Nieuws - Vereniging van Huntington

Update PTC Therapeutics over hun huntingtine-verlagende PIVOT-HD studie

Op 21 juni 2023 bracht PTC Therapeutics gegevens naar buiten over hun PIVOT-HD studie; PTC testte huntingtine-verlaging als een benadering om de ziekte van Huntington te behandelen. Welke gegevens presenteerde PTC, wat betekent dit en wat zijn hun volgende stappen?

Een samenvatting

Huntington-Tag

25 June, 2023

Schweizerische Huntington Vereinigung

Huntington-Tag Am Samstag, 24. Juni 2023 war es uns eine Freude den Huntington-Tag 2023 zu feiern. Wir trafen uns im Papiliorama in Kerzers, wo die 16 Mitglieder ein reichhaltiges Apéro mit anschliessender Führung genossen. Danach gab es eine Führung durch die tropischen Hallen des Papiliorama, die einen genossen die französische […]

Gematigd optimisme uniQure

23 June, 2023

Nieuws - Vereniging van Huntington

uniQure kondigt update aan over Amerikaanse Fase I/II klinische studie van de AMT-130 gentherapie voor de behandeling van de ziekte van Huntington