HD Focus

News Across the Globe

Bloom with Bella: A journey of self care

Huntington Australia

Bella, an Advanced Breathwork Facilitator and Reiki Practitioner based in Sydney, knows the heavy silence that often surrounds...

Huntington | Ricerca e sperimentazioni: un impegno costante

huntington-onlus

La Dott.ssa Caterina MARIOTTI, neurologa presso l’Istituto Neurologico Carlo Besta di Milano, ha partecipato all’annuale Assemblea dei soci per un aggiornamento sugli studi clinici e sulle sperimentazioni farmacologiche, attualmente in corso presso il suo Istituto.

L'articolo Huntington | Ricerca e sperimentazioni: un impegno costante proviene da huntington-onlus.

April 2025: This Month in Huntington’s Disease Research

HDBuzz

HDBuzz has ramped up to match the accelerating pace of Huntington’s disease research. April 2025 brought us insight on somatic expansion, replacing lost brain cells, and clinical trial updates. Read on for the highlight reel from this month!

Prilenia has entered into a collaboration and license agreement with Ferrer for the commercialization and co-development of pridopidine in Europe and other select markets

Help 4 HD International

Stopping C-A-G Repeat Expansion In Its Tracks

HDBuzz

A new study shows that lowering MSH3, a key DNA repair protein, with antisense oligonucleotide (ASO) therapy can stop CAG repeat expansions in HD patient-derived brain cells. This could be a promising way to slow symptom onset and progression.

Somatická nestabilita

Spoločnosť pre pomoc pri Huntingtonovej chorobe

Aktualizácia 24.4.2025 Vyradením MSH3 proteínu pomocou ASO sa v darovaných mozgových bunkách podarilo zastaviť somatickú nestabilitu. Prekvapivým zistením, je že pri vyradení MSH3 sa výrazne spomalil nárast počtu opakovaní CAG. Testy prebiehali na geneticky upravených myšiach. Je niekoľko spoločností ktoré sa zameriavajú na znižovanie MSH3. Snáď sa dočkáme v relatívne krátkej dobe aj testoch na …

Somatická nestabilita Čítajte viac »

Studie naar Huntingtine-verlagende therapie met tominersen gaat met lagere dosis

Nieuws - Vereniging van Huntington

Farmaceut Roche kondigt aanpassingen aan in het GENERATION HD2-onderzoek op basis van een tussentijdse analyse. De studie gaat door, maar in de resterende duur zal alleen de dosis van 100 mg worden gebruikt. De dosis van 60 mg komt te vervallen.

De internationale farmaceut Roche heeft een update gegeven over de lopende klinische studie naar tominersen, een experimentele therapie die het huntingtine-eiwit verlaagt bij mensen met de ziekte van Huntington. Een onafhankelijke datamonitoringscommissie (iDMC), die toezicht houdt op de veiligheid en voortgang van het onderzoek, heeft geadviseerd om het onderzoek voort te zetten, met één belangrijke wijziging: voortaan wordt alleen de hogere dosis (100 mg) van het middel verder getest.

Do Antidepressants Affect Cognitive Decline? There’s More To The Story For Huntington’s Disease

Enroll

Two recent studies offer fresh insights into how antidepressants, often prescribed to help manage mood and anxiety, are prescribed in Huntington’s disease (HD) and might also influence cognitive decline. One study zooms in on medication use in HD, while the other takes a broader look at dementia and antidepressants. Together, they reveal a complex and […]

In Memoriam: Tim McLean

Enroll

Studie naar Huntingtine-verlagende therapie met tominersen gaat verder met lagere dosis

Nieuws - Vereniging van Huntington

Farmaceut Roche kondigt aanpassingen aan in het GENERATION HD2-onderzoek op basis van een tussentijdse analyse. De studie gaat door, maar in de resterende duur zal alleen de dosis van 100 mg worden gebruikt. De dosis van 60 mg komt te vervallen.

De internationale farmaceut Roche heeft een update gegeven over de lopende klinische studie naar tominersen, een experimentele therapie die het huntingtine-eiwit verlaagt bij mensen met de ziekte van Huntington. Een onafhankelijke datamonitoringscommissie (iDMC), die toezicht houdt op de veiligheid en voortgang van het onderzoek, heeft geadviseerd om het onderzoek voort te zetten, met één belangrijke wijziging: voortaan wordt alleen de hogere dosis (100 mg) van het middel verder getest.

CHDI’s 20th Annual HD Therapeutics Conference Presentations

Enroll

Do Antidepressants Affect Cognitive Decline? There's More To The Story For Huntington's Disease

HDBuzz (English)

Two recent studies offer fresh insights into how antidepressants, often prescribed to help manage mood and anxiety, are prescribed in Huntington’s disease (HD) and might also influence cognitive decline. One study zooms in on medication use in HD, while the other takes a broader look at dementia and antidepressants. Together, they reveal a complex and evolving map of treatment decisions. But this doesn’t mean people living with HD should stop taking antidepressants. Let’s dig into why that is.

Evolving HD Medication Landscape

The first study examined medication use among people with HD, using data from thousands of people in Enroll-HD, the largest observational study of the disease. Among other things, Enroll-HD collects data on what medications are most commonly used during HD care. One striking finding? A staggering 84% of people with HD use at least one medication, with this number climbing as the disease progresses.

In the early stages, people with HD take an average of 2.5 medications. But as the disease advances, that number more than doubles to 5.2. This really highlights just how much a person’s medical needs change as HD progresses.

A Journey of Connection, Courage, and Hope – Why attending conferences can truly change your life

Moving Forward

A Journey of Connection, Courage, and Hope Why attending conferences can truly change your life – Written by Claudia Villa on 16th April 2025 Huntington’s disease…

When Bob Dylan Met Woody Guthrie – a very special evening for our families and beyond

“I cried at the start, while I was running, and at the end – it was 13 miles of emotion” - Tammy - Scottish Huntington's Association

Scottish Huntington’s Association is co-hosting a unique webinar presented by Woody’s grand-daughter Anna Canoni, President of Woody Guthrie Publications. As […]

Ten Golden Rules for Navigating Huntington’s Disease Research News

HDBuzz

Avoid the hype: HDBuzz has Ten Golden Rules for navigating news stories or press releases about Huntington's disease.

Understanding Chorea vs. Akathisia: Insights from Expert Discussion

Help 4 HD International

Recently, during a HIPE discussion the conversation shed light on the complexities of managing chorea, a involuntary movement frequently...

Tominersen – Znovuotvorenie programu

Spoločnosť pre pomoc pri Huntingtonovej chorobe

Aktualizácia z 19.4.2025  Testovanie lieku pokračuje v novej štúdii a tento týždeň bola upravená dávka ktorá sa počas štúdie používa.Celkovo je v štúdii 301 účastníkov a dostávajú dávku každých 16 týždňov. Podľa nezávislej komisie asi prináša liek nejaký benefit nakoľko upravili dávkovanie počas štúdie. Testovanie by malo byť ukončené v roku 2026. Originál článku tu. …

Tominersen – Znovuotvorenie programu Čítajte viac »

Genentech/Roche GENERATION HD2 study Update: Community Letter

News - Huntington's Disease Society of America

Update on the Phase II GENERATION HD2 study

Research – International Huntington Association

Roche has announced the continuation of the GENERATION HD2 Phase II clinical trial evaluating tominersen in individuals with early signs of Huntington’s disease. Following an interim analysis by an independent committee, no […]

uniQure Announces FDA Breakthrough Therapy Designation Granted to AMT-130 for the Treatment of Huntington’s Disease

Help 4 HD International

LEXINGTON, Mass. and AMSTERDAM, April 17, 2025 (GLOBE NEWSWIRE) -- uniQure N.V. (NASDAQ: QURE), a leading gene therapy company advancing...