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Cronaca di una sorte annunciata. Il podcast che legge il libro di Luis Aguilera sulla sua storia e sulla sfida all’Huntington

huntington-onlus

Luis Aguilera Vera ha 35 anni, è spagnolo, abita a Madrid. Ha perso il padre qualche anno fa, colpito dalla malattia di Huntington, una malattia rara, ereditaria geneticamente, neurodegenerativa e incurabile. Luis ora è un giovane “a rischio".
È di fronte a questa prospettiva che Luis ha deciso di scrivere un libro. Il titolo già ci catapulta al centro della sua vicenda: Cronaca di una sorte annunciata

L'articolo Cronaca di una sorte annunciata. Il podcast che legge il libro di Luis Aguilera sulla sua storia e sulla sfida all’Huntington proviene da huntington-onlus.

Cronaca di una sorte annunciata

huntington-onlus

Luis Aguilera Vera ha 35 anni, è spagnolo, abita a Madrid. Ha perso il padre qualche anno fa, colpito dalla malattia di Huntington, una malattia rara, ereditaria geneticamente, neurodegenerativa e incurabile. Luis ora è un giovane “a rischio".
È di fronte a questa prospettiva che Luis ha deciso di scrivere un libro. Il titolo già ci catapulta al centro della sua vicenda: Cronaca di una sorte annunciata

L'articolo Cronaca di una sorte annunciata proviene da huntington-onlus.

Cracking the Case: How a Smartphone “Detective” is Helping Track Huntington’s Disease Progression

HDBuzz

Smartphones can help scientists calculate a new clinical measure of HD, called the HD Digital Motor Score. Easier data collection could means less clinic trips, fewer people needed for studies, and a better understanding of HD. 

Regeneratívne terapie.

Spoločnosť pre pomoc pri Huntingtonovej chorobe

Glia transplantácia u myší – 16.7.2025  Vedci transplantovali zdravé glia bunky do mozgov myší s HCH. Výsledok bol, zlepšenie pohybu, pamäte a predĺženie života.  Originál článku tu. Podarilo sa obnoviť a začleniť nové neuróny do poškodených mozog myší – 8.4.2025 Toto sa podarilo použitím vlastných buniek myší a ich stimuláciou. Pomocou dvoch molekúl sa im podarilo spustiť …

Regeneratívne terapie. Čítajte viac »

Unsung Heroes: Could Glial Cells Treat Huntington’s Disease?

Enroll

New research is challenging how we think about treating brain diseases, like Huntington’s disease (HD). A study from the lab of Dr. Steven Goldman shows that transplanting healthy early-stage support cells from humans into the brains of adult mice that model HD improves movement, memory, and even survival. But that’s not all — these cells, […]

Hope over High Tea 4 HD: Brea and Leeanne’s Story

Huntington Australia

After receiving her Huntington’s disease diagnosis, 18-year-old Brea teamed up with her grandmother Leeanne to host their first...

Simon Says Stop: What a Children’s Game Can Teach Us About Early Huntington’s Disease

Enroll

Do you remember playing “Simon Says” as a child? It was fun, silly, and surprisingly tricky. You had to listen carefully and only act when you heard “Simon says”. If you moved at the wrong time, you were out. It turns out that Simon Says isn’t just a playground game. It’s also a helpful way […]

Walk 4 Hope

Huntington Australia

Join us as we walk together in hope, strength and solidarity to support people impacted by Huntington’s disease....

Have Your Say Now

Huntington Australia

Our 2025 Community Survey is now open! This is your opportunity to share what matters most to you,...

Школа семей с болезнью Гентингтона в Новосибирске!

Центр помощи пациентам с орфанными заболеваниями

5 июля в Новосибирске прошла Школа здоровья для семей с Болезнью Гентингтона. Это вторая по счёту встреча, которую провели «Редкие Люди» в Новосибирске. Благодаря поддержке Фонда Президентских грантов, в команду… More »

The post Школа семей с болезнью Гентингтона в Новосибирске! appeared first on Центр помощи пациентам с орфанными заболеваниями.

Valbenazín – KINECT-HD2 – Ingrezza – Aktualizácia 24.4.2024

Spoločnosť pre pomoc pri Huntingtonovej chorobe

Aktualizácia s 10.7.2025 Ďalšie výsledky preukázali prínos pre redukcii motorických a aj kognitívnych prejavov HCH. Vraj boli hlásené ľuďmi aj zlepšenia v oblasti pamäte a aj zlepšenie problémov s prehĺtaním.  Tento liek bol schválený v USA v roku 2023.  Originál článku tu. Aktualizácia s 29.3.2025 Výsledky III fáze preukázali zníženie mimovoľných pohybov hlavne na rukách a …

Valbenazín – KINECT-HD2 – Ingrezza – Aktualizácia 24.4.2024 Čítajte viac »

Honest, Courageous and Moving Stories – Testing positive for HD

Moving Forward

Honest, Courageous and Moving Stories – Testing positive for HD – Written by the Moving Forward team on 1st July 2025 On Monday 17 June, we…

Energy off balance: How Huntington’s disease influences the cell’s powerhouse 

Enroll

A recent study used miniature 3D brain models grown from stem cells to explore how the genetic change that causes Huntington’s disease (HD) might impact early brain development, before neurons even become neurons. What they found suggests that the tipping point that balances how cells mature may be off, and it could be because of […]

Maggie’s reflections from the Far North

Huntington Australia

This NAIDOC week, we’re spotlighting one of our HD specialists — Maggie, from Western Australia — whose work...

Survey results: moving forward together!

Moving Forward

Survey results: moving forward together! – Written by the Moving Forward team on 4th July 2025 On Wednesday, June 25th, an online webinar was held for…

Peeking at huntingtin and learning from a PET study

Enroll

A recent publication discusses a non-invasive way of measuring levels of expanded HTT protein in the brain, using an imaging tool called a PET tracer. The results were variable, but there’s still a lot to learn from the study as development of HTT tracers continues! Measuring Levels Of Huntingtin In The Brain One of the […]

Deglu-Acción: Una iniciativa para cuidar la deglución este verano 

Sabemos que el verano, aunque es una época para disfrutar y crear momentos inolvidables, también puede ser una temporada complicada para mantener las rutinas terapéuticas. Uno de los aspectos que […]

La entrada Deglu-Acción: Una iniciativa para cuidar la deglución este verano  se publicó primero en .

Le esigenze della Community Huntington in Italia: oltre la diagnosi, il bisogno di rete, guida e dignità

huntington-onlus

La community Huntington è fatta di pazienti, familiari, caregiver. Persone, molti giovani, che chiedono ascolto, dignità e strumenti concreti per affrontare una quotidianità difficile, segnata dalla fatica, dalla solitudine, dallo stigma.

L'articolo Le esigenze della Community Huntington in Italia: oltre la diagnosi, il bisogno di rete, guida e dignità proviene da huntington-onlus.

Школа здоровья для семей с болезнью Гентингтона 5 июля в Новосибирске

Центр помощи пациентам с орфанными заболеваниями

5 июля в Новосибирске состоится Школа здоровья для людей с болезнью Гентингтона и их родственников.Вы получите новую информацию о заболевании, диагностике, лечении и уходе за больными.В программе встречи примут участие:… More »

The post Школа здоровья для семей с болезнью Гентингтона 5 июля в Новосибирске appeared first on Центр помощи пациентам с орфанными заболеваниями.

Nu kan ni titta på webinaret från 2 juni om stödinsatser

RHS Riksförbundet Huntingtons Sjukdom

Nu finns äntligen inspelningen från webinaret den 2 juni tillgänglig om att ”Navigera rätt- Juridiska rättigheter och stöd vid neurodegenerativa sjukdomar” På webinaret delade två unga anhöriga med sig av sina upplevelser av att navigera i det snåriga systemet att söka rätt stödinsatser för sina föräldrar. Maja Mulaomerovic som är jurist på Familjen jurist delade…

Inlägget Nu kan ni titta på webinaret från 2 juni om stödinsatser publicerades först på RHS Riksförbundet Huntingtons Sjukdom.