Albinism Trust - New Zealand

Albinism Trust is committed to emphasising positives and achievements by people with Albinism. We are delighted to salute Daniel Holt a young man with Albinism who has trained hard at Auckland Millennium Institute on the North Shore. His drive to succeed sees him undertaking nine training sessions ay week  getting ready for the London 2012 Paralympics. We thank Blind Sport NZ for its encouragement of Daniel and the RNZFB for permission to share his story.The attached PDF file is shared with permission (c) RNZFB 2012.

     Outlook Winter 2012 -Daniel Holt article.pdf(545.19 KB)

We published a new booklet "Eyes Right"  an introduction to living with Albinism in New Zealand. Please contact us for your own copy or read the file on line.  Do  tell others about this publication which has been produced in collaboration with the Royal NZ Foundation of the Blind.  Click the file below :-

ALBINISM TRUST Eyes Right.pdf(1,060.55 KB)

In New Zealand its estimated that one person in every 17,000 has some type of albinism. "Albinism" refers to a group of inherited. People with albinism have absent or reduced pigment in their eyes, skin or hair. They have inherited genes which do not make the usual amounts of a pigment called melanin which is essential for the full development of the retina.  Lack of melanin in development of the retina is the primary cause of visual impairment in albinism. Albinism can affect the eyes, skin and hair (Oculocutaneous Albinism) or only the eyes (Ocular Albinism).  For detailed information on Albinism visit "Wikipedia" at http://en.wikipedia.org/wiki/Albinism

There are about 75 children known to have Albinism in New Zealand.  We aim to connect with all people with Albinism.  Explaining "Albinism" to  children can be difficult. Our booklet will help parents.  Another good explanation of albinism for children is at:- http://www.kidshealth.org/kid/health_problems/birth_defect/albinism.html

Every person with Albinism is an individual with potential. There are people with albinism in every sector of society overcoming challenges such as Low Vision and Sunburn.  Albinism Trust is interested in the many and varied real life experiences or insights of people with Albinism and those close to them.  We hope to bring practical common sense information together and publish a resource to help as required.  If you know of someone with something to share please let us know. 

Albinism Trust.   7 Earl Street, Levin 5510; 

Email    albinism AT inspire.net.nz

Sun Screen:-   

At the right side of this screen there is a PDF File copy of a letter received from the Department of Health.  We encourage you to review it for any relevance to your situation.         

"Albinism Trust" was set up in Palmerston North on Saturday 6th October and Certified on 12th October 2007. On 1st April 2008 we were Registered with the Charities Commission  [ Reg No CC22352 ] 

We have convened local seminars as follow:-

• Palmerston North:   Saturday 6th October 2007 

• Dunedin:   Saturday18 October 2008

• Hamilton:   Saturday 31st October 2009.

• Auckland:   Saturday October 9th 2010.  

• Wellington:   Saturday  September 10th 2011

SKYPE FORUM In order to broaden our connection we have begun a monthly SKYPE forum at 7 PM  on the last Monday of each month hosted by Kiwilittle

Low Vision

A big issue for people with Albinism is small print and seeing the things which are important.  For some years a Christchurch company "Blaxall Optics" has supplied a number of worthwhile low technology and inexpensive tools to help people with Low Vision. We are about to complete a Review of the "SeeTV" Binocular Spectacle.  

Some issues which have been raised include:-

• The cost of and access to Low Vision devices

• Educational Information resources.

•  Computer access.

•  Social networking and Facebook group.

•  Skin care availability of certain products.

•   Medical and Health professional awareness.

•  Communication with the RNZFB and its members.

•  Funding and fundraising.   

Other matters the Trust is working on include:-

•  Organisation and fostering of public awareness initiatives

•  Advocating to medical / health / pharmaceutical interests

•  Encouraging health profession awareness

•  Fostering public health, safety and educational awareness

• Organisation of personal support and individual advocacy

•  Engagement in work place and peer education

•  Provision of home and family reassurance

• Setting up peer support, coaching and mentoring activities 

• Organisation of face to face gatherings

Please Click here and  send an email helping us to connect