HD Focus

We’re back for the 3rd and final day of CHDI’s Huntington’s Disease Therapeutics Conference!

New Technologies and Breakthrough Science

This morning’s talks are kicking off with new technologies that have the potential of leading to breakthroughs in science for neurodegenerative diseases, like HD, and transform the field.

Ross Wilson: Molecular Scissors To Chop Out CAGs

Our first speaker is Ross Wilson, who is working on using CRISPR to selectively remove the disease-causing CAG repeats within the huntingtin gene. Whoa!

CRISPR is a molecular technique that began taking the scientific world by storm when it was broadly introduced in 2012. Just last year the first CRISPR-based drug was approved for blood diseases, like sickle cell anaemia.

You can think of CRISPR like molecular scissors. Researchers can use these molecular scissors to very precisely edit the genetic code to make all types of different changes. It’s a super powerful technique with many applications for diseases, including HD.

Nu finns program för kvällen! Missa inte att anmäla er! Huntingtoncentrum i Lund bjuder in till en informationskväll den 7 april kl 18-20.30. Programmet innehåller intressanta ämnen, t.ex. uppdateringar om kliniska prövningar och forskningsläget i Sverige och internationellt. Det kommer även hållas olika föredrag om allt från socialt samspel till sväljsvårigheter. Även vi på RHS…

Inlägget Program för Huntingtoncentrums informationskväll 7e april ute nu! publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

We’re back for day 2 of the CHDI Huntington’s Disease Therapeutics Conference! We’re kicking things off with some exciting talks on genetic modifiers and learning how we can advance them toward therapeutics for HD.

Advancing Genetic Modifiers Toward Medicines

Today's session is all about genetic modifiers - genes that contribute to the age of disease onset - which were discovered through massive genetic studies that looked at levels of every gene in someone with the gene for HD. This let researchers identify genes that correlated with earlier or later HD onset. Genes related to somatic instability were identified as modifiers in large genetic studies, called GWAS, or genome wide association studies. Researchers are advancing GWAS data towards therapeutics. This wouldn’t be possible without the collaboration between scientists and the HD community. Super exciting!

Seung Kwak: It’s Not All About Somatic Instability

Hello from Palm Springs! The HDBuzz team are here and ready to report on all of the exciting science that we are going to hear over the next 3 days from HD experts who have travelled from all over the world to be at CHDI's 20th Annual Huntington's Disease Therapeutics Conference. Get ready to follow along for some exciting Huntington’s disease research over the next 3 days!

Clinical Trial Updates

Our first set of talks are updates from pharma companies that have ongoing clinical trials.

PTC Therapeutics - PIVOT-HD Testing Votoplam

Up first is Amy-Lee Breadlau from PTC Therapeutics with an update on votoplam, formerly PTC-518. Votoplam is a HTT-lowering drug that’s taken as a pill. The idea is that by lowering the disease-causing protein, signs and symptoms of HD will be reduced.

Amy-Lee started by sharing the fantastic news that PTC has an exciting new collaboration with Novartis, a massive drug developer. PTC will complete the ongoing PIVOT-HD trial, but Novartis will be in charge of all future clinical trials, like their planned Phase 3.

Estudo busca mapear a realidade da DH no país e fortalecer políticas públicas para a comunidade Huntington A ABH – Associação Brasil Huntington prorrogou o prazo para participação na pesquisa nacional sobre a Doença de Huntington (DH). A iniciativa pioneira, que visa mapear a realidade da DH no Brasil, agora aceitará respostas da comunidade Huntington […]

O post Prorrogado prazo para participação de pesquisa inédita da doença de Huntington no Brasil apareceu primeiro em ABH - Associação Brasil Huntington.

Voor het tweede jaar loopt het campagneteam Huntington sport & sportevents mee met de 4 Daagse van de Nijmegen. De teamleden lopen verschillende afstanden maar allemaal met hetzelfde doel: zich laten zich sponsoren door familie, vrienden, collega's, bekenden en wellicht andere lopers onderweg.

In 2024 is een mooi bedrag opgehaald om het onderzoek naar een medicijn te bekostigen. In 2025 hoopt het team naast het bedrag te evenaren ook de ziekte bekendheid te geven, zij lopen in de bekende shirt van het campagneteam Huntington sport & sportevents. Dit shirt wordt bij talloze andere sportevents gebruikt zoals te zien is op de website van het campagneteam (https://www.cthsport.nl/). Dit jaar zijn ook rustposten te vinden langs de route zodat mensen even kunnen bijkomen maar waar de ziekte bekendheid wordt gegeven.

In a recent forum, three medical professionals came together to address pressing questions submitted by the Huntington's Disease...

We’re back for day 2 of the CHDI Huntington’s Disease Therapeutics Conference! We’re kicking things off with some exciting talks on genetic modifiers and learning how we can advance them toward therapeutics for HD. Advancing Genetic Modifiers Toward Medicines Today’s session is all about genetic modifiers – genes that contribute to the age of disease […]

Även i år är RHS medarrangör till Anhörigdagen i Göteborg tillsammans med Funktionsrätt, ABF, FUB, NKA, Sudieförbundet vuxenskolan och Västra götalandsregionen. Bland föreläsarna finns bland annat Andreas Forsén Johnsson med sin föreläsning ”Vi har prioriterat bort tjafs”. Att ta vara på livet och vad som blir viktigt när tiden är utmätt. Andreas lever med Henrik…

Inlägget Anhörigdag i Göteborg 8 maj publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

It is with great sadness that we received the news that IHA Vice President Cao Xi has passed away, after a short illness.  Xi was also the Founder and President […]

Hello from Palm Springs! The HDBuzz team are here and ready to report on all of the exciting science that we are going to hear over the next 3 days from HD experts who have travelled from all over the world to be at CHDI’s 20th Annual Huntington’s Disease Therapeutics Conference. Get ready to follow […]

Ako iste vieme cvičenie je prospešné pri boji s HCH. Netreba ale zabúdať aj na mozog a jeho používanie, čítanie, učenie sa nových zručností pomáhajú pri spomalení progresu ochorenia. Niekoľko typov ako cvičiť svoj mozog a bojovať tak aspoň nejakým spôsobom proti HCH. Hádanky a hry: Krížovky, sudoku a pamäťové hry dokážu udržať váš mozog …

Kognitívny tréning Čítajte viac »

It was only after a chance remark by a friend that Joanne decided to visit her GP, followed by an […]

Three members of staff have been recognised for their long service to Scottish Huntington’s Association and the families we support. […]

We all know that exercise is good for our bodies, but what if working out your brain could slow down Huntington’s disease (HD)? Dr. Estela Càmara and her wonderful team from IDIBELL, a research institute in Spain, have uncovered some exciting news: staying mentally active throughout your life might actually help slow brain shrinkage and […]

URGENT: Demand No Cuts To Medicaid Congress is discussing MASSIVE cuts to Medicaid, which could drastically impact thousands of HD...

The post Demand NO CUTS to Medicaid! first appeared on Huntington's Disease Society of America.

Nytida arrangerar den 6 mars kl 10.00-10.45 ett webinar om Huntingtons sjukdom. RHS styrelseledamot och verksamhetschef för Sorbus vårdboende, Carina Hvalstedt, föreläser tillsammans med Katarina Sjöstrand och Elisabeth Karlsson från Grännässtrand vårdboende om hur vi kan ge det bästa stödet till personer med Huntingtons sjukdom. Missa inte detta tillfälle att få nya kunskaper. Läs mer och…

Inlägget Webinar 6 mars kl 10.00. Hur ger vi det bästa stödet till personer med Huntingtons sjukdom? publicerades först på RHS Riksförbundet Huntingtons Sjukdom.

Love Knows No Bounds: Navigating HD Together - A Deeper Dive Communication and Care: Walking the Path Together Lisa Mooney's Question:...