Journal of Huntington's Disease

10/03/2026

💪 Exercise and Huntington’s Disease: More Than Just Movement

A new study explored the impact of moderate-intensity exercise during a four-week inpatient rehabilitation program for people with mid-stage Huntington’s disease (HD).

Participants were split into two groups:
🏋‍♀ Exercise Group – performed physical activities such as walking, resistance training, adaptive cycling, and water exercises.
🐴 Control Group – performed non-physical activities such as hydrotherapy, horse mediation, activities promoting emotional/physical relaxation and cultural activities.

Key Findings:
• Exercise didn’t significantly change motor scores compared to standard rehab.
• Exercise reduced anxiety, depression, apathy, and psychosis symptoms, whilst enhancing executive function and attention.
• The control group experienced improved psychological symptoms like depression, apathy, and irritability.

Takeaway: Exercise isn’t just about physical fitness, it supports mental health and cognitive function beyond standard care too. Long-term support after rehab may help maintain these benefits.

📖 Read the full study to learn more about how exercise can complement HD rehabilitation: https://journals.sagepub.com/doi/epdf/10.1177/18796397261422975

02/03/2026

❓What makes good care in nursing homes for residents with Huntington’s disease (HD)?

A new qualitative study explores this question by listening to the people who know best: formal caregivers (staff) and informal caregivers (family members) in three specialised nursing homes in the Netherlands.

👩‍⚕️ Formal caregivers emphasised supporting each person with HD in maintaining their autonomy, while also recognising areas where assistance is needed. They also highlighted that emotional support, attention to nutritional needs, and palliative care are all essential components of high-quality care for these individuals.

👨‍👩‍👧‍👦 Informal caregivers noted the need for a daily routine, supportive conversations, and a pleasant atmosphere in the nursing home were all important when caring for an individual with HD.

Both formal and informal caregivers emphasised the need for well-trained staff, effective teamwork, and sufficient staffing levels to ensure high-quality care for people with HD.

Bottom line: Whilst formal and informal caregivers have different perspectives on what is necessary for good care in people with HD, they agreed on the importance of a skilled and familiar care team to best support the individual’s needs.

🔗 To read more about this article, follow the link: https://journals.sagepub.com/doi/epub/10.1177/18796397251410253

23/02/2026

🧰 Tools to measure cough dysfunction in HD

People with Huntington’s disease (PwHD) often have a weaker cough. That might not sound serious, but a strong cough is essential for clearing food, drink, or saliva from the airway. When coughing is weak, the risk of aspiration pneumonia, the leading cause of death in people with HD, increases.

So, what if there were simpler tools?

A recent research study explored whether two other measures could help identify cough problems in people with HD:
🖐️ Handgrip strength: how hard someone can squeeze a handheld device that measures grip force.
🫁 Index of pulmonary dysfunction: a measure of how well the lungs are working overall.
Bottom line: Both handgrip strength and overall lung function showed promise in detecting cough dysfunction. This could help doctors to diagnose breathing issues in PwHD earlier, to prevent serious complications in the future.

🔗 To read more about this review, follow the link: https://journals.sagepub.com/doi/epub/10.1177/18796397251385607

09/02/2026

🇻🇪 The Girl at the End of the World

This editorial article presents a deeply personal reflection by Alex Fisher, a Senior Occupational Therapist in Birmingham, UK, on humanitarian and care efforts for individuals with Huntington’s disease (HD) in Barranquitas, a small fishing village in Venezuela. This country has the highest known concentration of people with HD worldwide, largely stemming from a single ancestral lineage in the Lake Maracaibo region.

💜 Drawing on her personal experience, Alex explores the creation of the Caregivers’ Programme and the ongoing work of Factor-H and Habitat LUZ to improve the lives of people affected by HD in this community. This is not a scientific paper, but a narrative of what it is like to witness suffering up close, and what stays with you long after you leave. No prior knowledge of HD is required to read this piece; it is about people, the struggles they face and their strength in the most difficult circumstances.

🔗We invite you to read the article and reflect on the lives and stories it brings into view: https://journals.sagepub.com/doi/epub/10.1177/18796397261416568

02/02/2026

🧬 Intermediate alleles in HD: what we know

Some people who undergo genetic testing for HD have intermediate alleles. This means they have 27-35 CAG repeats. Whilst these individuals will not go on to develop HD, scientists are still learning what, if any, effects they might have on their health.

A recent review looking at previous studies between 1993 and July 2024 found that some people with intermediate alleles showed HD-related (and unrelated) symptoms, or differences in brain scans. However, these symptoms were not always specific to HD as they were also seen in people who do not have HD.

✅ Bottom line: having an intermediate allele doesn’t mean you will develop HD, but research continues to explore what it might mean for overall health.

🔗 To read more about this review, follow the link: https://journals.sagepub.com/doi/epub/10.1177/18796397251397683

09/01/2026

✨ Welcome to 2026! ✨

As we move into the new year, we’re reflecting on how to make our social media spaces more engaging, inclusive, and meaningful for our global community. 🌏💡

We’d love to hear from you: how do you like to engage with academic content online? What formats, topics, or types of discussion would make you most excited to interact with us this year? Your input will help shape content that connects and inspires across borders.

Share your thoughts in the comments, we can’t wait to learn from you! 💬

22/12/2025

As the year comes to a close, we’d like to wish everyone in the global Huntington’s disease community a peaceful holiday season.

We’re incredibly grateful to people with Huntington’s, their loved ones, advocates, researchers, and clinicians who continue to share knowledge and hope throughout the year.

Wishing you moments of rest, connection, and kindness, wherever you are in the world. 💙✨

Happy Holidays from all of us.

15/12/2025

🧠 Caring for people with HD (PwHD) can be incredibly challenging.

💜 Caregivers play a vital role in supporting PwHD, however, providing this support often comes with significant pressures.

A recently published review article brought together evidence from across the literature to explore what shapes the challenges faced by caregivers of PwHD. This included:

• The severity of symptoms experienced by the PwHD
• The availability of external support
• The caregiver’s own mental health

🚨 These findings highlight the urgent need for targeted support services and interventions that recognise and respond to the specific needs of caregivers for PwHD.

📖 See more details here: https://journals.sagepub.com/doi/full/10.1177/18796397251377237

01/12/2025

📏 How do we choose the “right” way to measure symptoms in Huntington’s disease (HD)?

Each approach, whether it’s self-report from people with HD (PwHD), clinician-rated assessments, or performance-based tests, offers a different piece of the picture. Understanding the strengths and limitations of these tools helps us make more informed decisions in both research and clinical care.

A recent study explored how these different types of measures compare, shedding light on where they align and where they diverge.

🔍 What the study found:
• PwHD self-reporting symptoms aligned strongly with how clinicians rated their motor symptoms, sleep/fatigue, and mental health.
• However, the alignment between self-reporting symptoms and clinician ratings was weaker for speech, swallowing, and cognitive symptoms.
• When PwHD self-reported symptoms this showed very minimal relationships with performance-based tests (e.g. wearable device-based estimates of sleep and activity).

💬 How do you think we should capture the full picture of Huntington’s disease? Leave your thoughts in the comments below.

🔗 See more details here: https://journals.sagepub.com/doi/full/10.1177/18796397251366313

24/11/2025

💜 Recognising emotions may become difficult for people with Huntington’s disease (PwHD).

A new review that looked at studies from January 1993 until January 2025 shows that identifying angry, fearful, disgusted, and sad facial expressions may be difficult for people with manifest (symptomatic) HD. However, identifying happy or neutral faces appeared to be fine.

Understanding this can help families, friends, caregivers, and healthcare professionals make sense of everyday changes for PwHD.

Have you seen this in your HD journey, whether personally, professionally, or as a caregiver?

🔗 To read more about this review, follow the link: https://journals.sagepub.com/doi/10.1177/18796397251390252

18/11/2025

The Journal of Translational Science in Rare Diseases has an open call for a new Editor in Chief. Read more here regarding the profile requirements and how to apply:

Subscription and open access journals from Sage, the world's leading independent academic publisher.

17/11/2025

The Journal of Huntington's Disease is pleased to share that a new Social Media Editor has joined our team. We look forward to enhancing our updates, sharing highlights from current and upcoming issues, and engaging more actively with our community.

Thank you for continuing to follow and support our journal.