Passionate young researchers join forces with families to form Huntington's Disease Youth Organisation - New Zealand

27 October 2015

About Huntington's Disease Youth Organisation NZ


Huntington’s Disease Youth Organisation New Zealand
Huntington’s Disease Youth Organisation New Zealand

Huntington’s disease (HD) is a neurodegenerative condition that leads to involuntary writhing movements (called chorea), cognitive decline and dementia. The symptoms are typically noticeable in mid-adult life.  This devastating condition is known to be an autosomal dominant inherited disease, which means that any child (male or female) with one affected parent stands a 50% chance of inheriting the disease.

It’s common for people afflicted with the HD gene to feel alone and alienated from society. Young people with HD often feel particularly marginalised. That is the reason behind the importance of raising awareness of this silently devastating disease. The Huntington’s Disease Youth Organization of New Zealand (HDYO-NZ) is a nascent New Zealand-based organisation that strives to change this trend by educating, advocating and supporting youth impacted by HD. 

 

About Us: Huntington’s Disease Youth Organisation New Zealand

HDYO NZ is made up of young passionate BRNZ neuroscientists who specialise in HD research at the Centre for Brain Research. Other members of this organisation include young HD family members who understand the urgent need to raise awareness of HD amongst youth in New Zealand. 

HDYO NZ is affiliated with other HD community groups, including the Huntington’s Disease Associations of New Zealand (Auckland, Wellington, and Christchurch) and HDYO international, to provide stronger support services for HD family members and youth.

 

Knowledge and Awareness is Power 

The vision of HDYO NZ is to empower New Zealand youth impacted by HD through education, advocacy and support. Their long term plans will develop and flourish over the coming years. However, their immediate plan is to build a youth-friendly online support platform, through which they can provide kiwi-flavoured scientific resources and links to the hottest international HD research. They are also hoping to use their website to create a hub where youth can contact other relevant partner organisations to receive specialised support. To get this amazing website up and running they need funding, that is why they have been busy with a calendar of fundraising events!

 

 

Fundraising event: bake sale a sweet success


HDYO NZ had two bake sale events (7th of May and 16th of September) at the Faculty of Medical and Health Sciences, The University of Auckland, to raise awareness amongst scientists and clinicians. This came at just the right time of the day, when passing students needed a “pick-me-up”.

 

HDYO NZ FOUNDERS AND RICHARD FAULL

The bake sale (7th of May) to raise money for HDYO NZ at the University of Auckland, Faculty of Medical and Health Sciences. Pictured is our patron from Brain Research New Zealand, Professor Richard Faull along with HDYO NZ founding members (L to R): Dr Nasim Mehrabi (BRNZ HD researcher), Dr Malvindar Singh-Bains (BRNZ HD researcher), and Samantha Murray (BRNZ PhD student).

 

 

HDYO NZ FOUNDER MALVINDER SINGH BAINS AND FAMILY REP LEANNE KNOX

Pictured here (left) is BRNZ researcher and HDYO-NZ lead Dr Malvindar Singh-Bains along with co-lead and HDYO-NZ family representative Leanne Knox.

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Fundraising event: The Inheritance film screening


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On the 9th of October 2015, HDYO NZ hosted a public screening of the acclaimed New Zealand film “The Inheritance”. An intensely emotional and confronting documentary about a family’s journey through Huntington’s Disease that touched on themes close to the heart of HDYO NZ members and supporters.

 

Join HDYO NZ and offer your professional expertise and knowledge  

Currently, in New Zealand, we have limited resources when it comes to supporting people living with HD. Because of this, a lot of the effort goes into supporting symptomatic individuals. In families with the HD gene, it is often the youth who are impacted by seeing their mother, father, grandparents, uncles or aunts struggling with the disease. Combine this with their internal problems of possibly inheriting the disease themselves, dedicating their lives to becoming carers, and losing their loved ones.  HDYO-NZ is comprised of young HD scientists and family members impacted by HD, who are incredibly passionate about raising public awareness of the condition, so we can lessen the fear that HD youth may have, so hope can take its place.  

 

HDYO New Zealand warmly welcomes the participation of fellow researchers at BRNZ. Get involved by raising awareness and funds for youth suffering from HD.

Email Dr Malvindar Singh-Bains at m.singh-bains@auckland.ac.nz

Follow HDYO NZ on Facebook:https://www.facebook.com/HDYONZ/

 

 

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