HD Focus: News Across the Globe

Meet Strictly fundraising champ Trishia!

13 June, 2023

Scottish Huntington's Association

Ballroom beginner Patrishia Adams from Easterhouse entered a prestigious dance competition – then gave herself just 10 weeks to learn all the steps and raise as much money as possible for Scottish Huntington’s Association. The 42-year-old anaesthetics nurse hadn’t danced since her ballet and tap days 30 years ago. But

The post Meet Strictly fundraising champ Trishia! appeared first on Scottish Huntington's Association.

Disappointing news about our request for NICE Guidelines

13 June, 2023

HDA - UK

HSG2023 - gericht op Kennisagenda HKNN

13 June, 2023

Nieuws - Vereniging van Huntington

De Huntington Stimulation Grant 2023 is open voor aanmeldingen

De Vereniging van Huntington (VvH) vindt het uiterst belangrijk dat wetenschappelijk onderzoek naar de ziekte van Huntington in Nederland wordt gedaan. Daarom stelt de VvH dit jaar een bedrag van maximaal € 50.000,- beschikbaar voor veelbelovende, kleinschalige studies met een innovatief karakter.

Recent heeft het Huntington KennisNet Nederland haar Kennisagenda gepubliceerd (zie https://www.hknn.nl/onderzoek/kennisagenda). In dit werk hebben ze de belangrijkste zorgaspecten in kaart gebracht en mogelijkheden tot onderzoek hierbinnen geïdentificeerd. De VvH heeft daarom besloten om voor 2023 projecten te honoreren die zich richten op de onderzoeksmogelijkheden binnen de Kennisagenda. We nodigen iedereen, die binnen dit thema onderzoek doet, uit om een voorstel in te dienen. Let op: dit jaar kan er voor het eerst meer dan één project worden toegekend mits het totale bedrag van € 50.000,- niet wordt overschreden.

Die Europäische Huntington-Vereinigung Conference

10 June, 2023

Schweizerische Huntington Vereinigung

EHA freut sich, Sie einladen zu können, sich der HD-Gemeinschaft auf der bevorstehenden Konferenz in Blankenberge, Belgien, vom 19. bis 22. Oktober anzuschließen. Die Konferenz steht allen offen, die in ihrer Familie mit Huntington leben oder sich als Angehörige, Freunde, Verwandte oder Freiwillige für die Krankheit interessieren

Wellbeing focus group

6 June, 2023

HDA - UK

Carers Week 2023

5 June, 2023

HDA - UK

Volunteers week 2023

2 June, 2023

HDA - UK

National Lottery funding celebration

1 June, 2023

HDA - UK

Opgroeien in een Huntingtongezin

24 May, 2023

Nieuws - Vereniging van Huntington

Ben jij opgegroeid met een ouder met Huntington? En ben je nu tussen de 18 en 35 jaar?

Huntington’s disease therapeutics conference 2023 - Day 3

22 May, 2023

HDBuzz (English)

Welcome to the third and final day of HD science, live from Dubrovnik, Croatia!

Our Twitter updates are compiled below. Continue to follow live updates for the final day of the conference with the hashtag #HDTC2023.
Check out our coverage of Day 1 here: https://en.hdbuzz.net/343 and day 2 here: https://en.hdbuzz.net/344.

Biomarkers

This morning’s session will focus on biomarkers, things we can measure to get a picture of a person’s health or their response to a drug. Different types of biomarker measurements might focus on predicting onset, monitoring a person’s HD, or checking drug safety. As we heard last night, NfL levels can help us get a better picture of brain health, but there are other proteins also being studied for this purpose.

HD Clarity

Start here!

22 May, 2023

HDBuzz (English)

Welcome to HDBuzz! This special page is for people who are new to Huntington's disease, or new to the world of HD research.

Reading the articles linked here will help you pick up the basics of what Huntington's disease is, and get up to speed with some of the most promising things scientists are doing to come up with effective treatments for HD.

Huntington's disease - the bare essentials

* Our Science FAQ covers the very basics of HD and introduces some ideas about why we need research to find treatments.

About HDBuzz

* Our HDBuzz FAQ and People Page explain what HDBuzz is, and the people behind it.
* And our Funding page explains where we get our money from and how we make sure HDBuzz is neutral and reliable.

The most promising possible treatments

Some of the world’s top scientists are working round the clock to develop treatments for Huntington’s disease - and real progress is being made. Dozens of possible treatments are being worked on, and every day a successful treatment gets one day closer. Here are some leading approaches being tested in the clinic.

United for change in Parliament

15 May, 2023

HDA - UK

DOUBLE your donations with the Big Give

15 May, 2023

HDA - UK

Mindful of Huntington's - what is this year's May awareness campaign about?

9 May, 2023

HDA - UK

Huntington’s disease therapeutics conference 2023 - Day 2

4 May, 2023

HDBuzz (English)

Welcome to the second full day of HD science, live from Dubrovnik! After yesterday’s amazing basic science talks, today begins with a session focused on companies developing new experimental treatments for HD.

Our Twitter updates are compiled below. Continue to follow live updates for the rest of the conference with the hashtag #HDTC2023.

Check out our coverage of Day 1 here: https://en.hdbuzz.net/343 . We’ll post summaries in article format for each day of the conference.

HD therapeutic candidates

A unique approach to ASOs

Huntington’s disease therapeutics conference 2023 - Day 1

26 April, 2023

HDBuzz (English)

Hello from Dubrovnik, Croatia, where the 2023 CHDI Therapeutics Conference will be taking place from Monday, April 24th, through Thursday, April 27th!

This conference is a big one for HD researchers worldwide, from industry, academia, and nonprofit. Dozens of scientists will give talks on all things HD, from genetics, to therapeutics, to clinical trial news.

The HDBuzz Editorial team will be on the scene starting on the morning of Tuesday, April 24th, live-tweeting scientific talks and updates on the progress of clinical trials. Our Twitter updates are compiled below. Continue to follow live updates for the rest of the conference with the hashtag #HDTC2023.

For a summary of last year’s conference, start here: https://en.hdbuzz.net/320 We’ll post summaries in article format for each day of the conference.

Knowing what we need to know

An update on Proof HD

25 April, 2023

HDA - UK

PROOF-HD study of pridopidine ends with negative result

25 April, 2023

HDBuzz (English)

Top line results of the PROOF-HD study, run by Prilenia Therapeutics and testing pridopidine, have been announced at the American Academy of Neurology convention. Sadly the trial outcome was negative. We recap the history of pridopidine in Huntington’s disease, review the trial results, and figure out where this disappointing result leaves us.

The drug: pridopidine

Pridopidine has been under investigation as a possible treatment for Huntington’s disease since the early 2000s and has a long and colourful history. It was initially developed by the Swedish company Neurosearch who called it Huntexil.

Neurosearch thought pridopidine was able to stabilise levels of dopamine, which is important for movement control. They hoped it might therefore suppress involuntary movements and improve voluntary movements. They ran two trials called MermaiHD and HART, but the drug did not show conclusive benefits for movement control.

In 2012, Teva Pharmaceuticals purchased the right to develop pridopidine, and ran a third study called PRIDE-HD which tested several different doses of pridopidine, again with the aim of improving movement function.

Guarantee our essentials - a united call for action

20 April, 2023

HDA - UK

Invite your MP - Parliament reception

19 April, 2023

HDA - UK