HD Focus

Imagine the gene that causes Huntington’s disease (HD) as a vast river. At its source is the CAG repeat – a genetic letter code that dictates how the river will flow. As the river moves downstream, it transitions into the letter code CCG, forming a continuous current. But what if, hidden beneath the surface, tiny […]

Next Online Session in Spanish “Assisted Reproduction and PGD in Huntington’s Disease: Cristina’s Story” – Written by the Moving Forward team on 5th May 2024  …

Testimonials and reasons to be part of Huntington events – Online Session in Spanish – Written by the Moving Forward team on 25th April 2024 Our…

On May 5th, PTC Therapeutics released results from their ongoing Phase 2 PIVOT-HD clinical trial for PTC-518, now called votoplam. Excitingly, they announced that this trial met its primary endpoint – votoplam was shown to lower huntingtin protein levels. We also learned more about the safety of this drug and some insights into how it […]

Onlangs overleed paus Franciscus. Tijdens zijn pausschap zette Franciscus zich in voor minder bedeelden, waaronder ook mensen met de ziekte van Huntington.

In de film Dancing at the Vatican zien we hoe arme families uit Latijns Amerika die met Huntington te maken hebben, erin slagen naar Rome te reizen. Niet alleen voor een audientie met de paus, maar ze hoorden hem zelfs voor het eerst openlijk spreken over de ziekte. Deze film legt dat mooie moment vast en kan als bron van inspiratie dienen voor de families die met deze vreselijke ziekte te maken hebben.

Je vindt de film hier 

Onlangs viel bij onze leden het eerste Kontaktblad van 2025 op de deurmat. Het exemplaar is samen met het Katern voor leden ook online in te zien. 

Het Kontaktblad staat weer vol met nuttige ervaringsverhalen, interviews, reportages over allerlei onderwerpen. In het Katern vind je artikelen uit de wetenschappelijke hoek van Huntingtononderzoek.

Het Kontaktblad lezen? Leden hebben een link ontvangen waarmee ze toegang hebben tot de online versie.

Nog geen lid? Meld je aan via LB@huntington.nl.

May 5, 2025 PDF Version – Study met primary endpoint with dose-dependent blood HTT protein lowering at Week 12 – – Favorable dose-dependent trends across clinical scales in Stage 2 […]

Aktualizácia 12.5.2025 Niečo viac o Votopalme, Oficiálne je potvrdená spolupráca Novartisu a PTC- ´Therapeutics. Ďalej vieme, že liek je podávaný formou tablety je to malá molekula a je neselektívny. A hladina sa znížila pri vysokej dávke lieku o 36% a aj v tekutine obklopujúcej mozog.Pri pacientoch v ranom štádiu klesla aj hladina NfL pri oboch …

PTC 518 – Votopalm Čítajte viac »

We all know heart health matters – but what if the same habits that keep your heart strong could also protect your brain? A new study reveals a link between cardiovascular health and lower levels of neurofilament light (NfL), a key biomarker of brain cell damage for Huntington’s disease (HD) research. So what does this […]

FOR IMMEDIATE RELEASE Huntington’s Disease Awareness Month: A Month-Long Campaign to Educate and Empower This May, Celebrate and Raise Awareness...

The post Huntington’s Disease Awareness Month: A Month-Long Campaign to Educate and Empower This May, Celebrate and Raise Awareness with HDSA first appeared on Huntington's Disease Society of America.

Imagine a vast and intricate factory, humming with activity. This factory isn’t manufacturing cars or electronics but rather the essential components that keep our bodies running. Inside each cell, thousands of tiny workers, known as proteins, perform highly specialized tasks. These proteins are responsible for everything from building cellular structures to sending messages and cleaning […]

Every May, communities around the world come together to shine a light on Huntington’s Disease (HD). From families and caregivers to clinicians, researchers, and advocates, we are united by one […]

You’re invited to take part in a powerful and creative project that gives voice to the lived experience...

May is Huntington’s Disease Awareness Month a time to uplift the voices of those impacted, challenge stigma, and spotlight the strength that lives within our community. For me, this month […]

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

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.

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!

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.

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 […]