The Power of Music Therapy

For Music Therapist Sunniva Ulstein Kayser, music is an important channel for communication. It offers a way to see more of the person and it establish an equal platform for interaction.

Want to learn more about how to use music as therapy? We will run a music therapy-workshop during our conference in Bucharest 4.-6. October 2019. Join the event for more information.

Read more about Sunniva’s experiences with music therapy here

New variant of Juvenile Huntington’s Disease (JHD) discovered

The findings indicate that JHD should be separated into two distinct categories, which in turn may be treated differently. Children with a long mutation length shows a faster rate of disease progression compared to adults and children with a shorter length.

– Our study identifies the most aggressive juvenile-pediatric variant that affects children, Dr. Ferdinando Squitieri states.

This important finding may open the door to new therapeutic strategies for ‘attacking’ this rare variant of Huntington’s Disease.

Read more here. 

Presence and Treatment of Psychiatric Symptoms

 

What are the most common psychiatric symptoms in people with Huntington’s disease? And what can you do about them? In this 14 minute presentation by Karen E Anderson from Georgetown University, you can learn more about psychiatric symptoms – with apathy in particular.

(This talk is especially targeted towards professionals but it can be very useful to family members as well)

What is…Enroll-HD?

Enroll-HD is a worldwide observational study for Huntington’s disease families. It monitors how the disease appears and changes over time in different people. It is in other words a prospective observational study, meaning it tracks people over time, rather than asking them to recall how their symptoms have changed.

It is also an important platform for other studies, where researchers can use the data collected by Enroll-HD. Learn more.

Huntingtin Lowering:

A new treatment?

Wave Life Sciences is currently testing a new treatment known as ‘Precision medicine’. The drug only targets the disease-causing protein and leaves the healthy protein alone – a completely unique approach. Read more.

Subtitles:

CHDI:

Huntington News

CHDI have published their Therapeutics Conferences video from Malta and Palm Springs. Get updated on the latest trials, HD-COPE and HDYO.

Press the ‘CC’ button for subtitles

Huntingtin lowering:

Results of the First Huntingtin Lowering Drug Trial

 

Listen to Sarah Tabrizi’s talk at the EHDN Plenary Meeting.

In this lecture, Trabrizi walk us through Huntingtin Lowering and the results of the first Huntingtin Lowering drug trial – which looks very promising!

Huntingtin lowering:

Groundbreaking results

11th of December will probably go into history along with the discovery of the Huntington gene in 1993. It was the day IONIS Pharmaceuticals announced the results from the first Huntingtin lowering trial in humans. The result exceeded all expectations. “I almost cried when I got the results,” Astri Arnesen the President of EHA, stated.

Read more here.

Huntingtin lowering:

What’s next?

When the groundbreaking results of the Huntingtin lowering trial was announced, the European Huntington Association travelled to Basel. Here Astri Arnesen and Svein Olaf Olsen met Roche Pharmaceuticals, the company that have been taking over the next phase of the trial. Here you can watch a interview about the trip with EHA’s president Astri Arnesen.

Huntingtin lowering:

What is it?

Prof. Sarah Tabrizi led the Huntingtin Lowering trial, IONIS-HTTRx, that showed groundbreaking results right before Christmas. One year ago we sat down and talked with her about Huntingtin lowering. At that time the IONIS-HTTRx trial in humans was halfway through and the groundbreaking results was not yet known.

Here is a interview with Sarah Tabrizi, first published in Spring 2016 issue of Enroll!

In this lecture Prof. Tabrizi walk us through Huntington’s Disease, research and Huntingtin Lowering.

Taking part in HD history

During our conference in Sofia we sat down and talked with Dr. Ralf Reilmann. Dr. Reilmann is neurologist and the founder of George Huntington Institute in Münster. He is involved in most of the clincial trials in HD in Europe and talked to us about the importance of participating.

News from Therapeautics Confernce

In this video ‘Postcard from Palm Springs 2016’, HD family advocate and former NBC reporter Charles Sabine presents highlights from CHDI’s 11th Annual Disease Therapeautics Conference, a Forum for Drug Discovery and Development which ran from February 22nd to 25th 2016 in Palm Springs California. The message is overwhelmingly positive; a ‘new age of hope is dawning’.

Here you can find the video subtitled in Greek, Polish, Russian, Italian, French, Arabic, German, Spanish, Romanian, Finnish and Dutch. 

Hope for the future

Prof. Georg Bernhard Landwehrmeyer is a professor of neurology (clinical neurobiology) at Ulm University in the department of neurology where the central coordination of the European Huntington’s Disease Network (EHDN) is situated. Prof Landwehrmeyer was instrumental in founding EHDN in 2004. He has served as principal investigator in several Huntington’s disease trials and is the principal investigator of Enroll-HD study, a  longitudinal observational study on Huntington’s disease.

GENETIC TESTING AND AVAILABLE TREATMENT

Prof. Dr. med Jean-Marc Burgunder works in Switzerland. He studied neurology at the University of Bern and in 1999 he was appointed titular professor. Dr. Burgunder then served as a medical professor at the University of Singapore from 2002 to 2004. On his return, he established himself in Bern, where he teach, conduct research and work with genetic counselling.