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5 January 2001

Here's an update on the highlights of our activities over recent months, and a progress report on those currently under way.

Setting up a NZ Organisation for Rare Disorders

LDNZ Trustees played a significant role in helping to set up this organisation at its inaugural conference in September 2000. It was a very successful start with over 80 people in attendance from more than 30 different organisations. Several researchers, clinicians and representatives from funding and policy agencies provided useful input into our discussions.

A working group is continuing the task of refining the issues raised, into a set of objectives and a mission statement for NZORD. We expect formal incorporation to be completed in February or March.

LDNZ Trustees meeting

In early September last year the three trustees of LDNZ, John Forman, Dianne Webster and Jenny Noble, along with the Board Secretary Judith Forman, met to consider the accounts and a report of activities to June 2000. Other people who were present at the NZORD conference and who had an interest in Lysosomal diseases were invited to attend also, and 7 people joined us.

Accounts showing total income of $10,882, and expenditure of $3,006 in the period to 30 June 2000 were approved. Approval was also given for further expenditure of $3,140.

The total expenditure of $6,146 consists of $2,000 for travel to the Australian MPS conference, $1918 for travel to the International conference in Minneapolis, and $2,223 for admin costs, website fees and subscriptions. Approval was also given to send $2,000 to the International Society for Mannosidosis and Related Diseases. This is funds that were raised specifically for research purposes.

Copies of the audited accounts are available if you wish to see them. Feel free to ask.

More family contacts on our mailing list

It seems a slow process at times, but gradually we are making contact with more families. Our list has grown from 19 to 32 for those affected by MPS and ML conditions, and we now have contact with 5 Batten families, and about 20 others through the Gaucher Association mailing list. However some of these contacts have been lost as people move and the mail comes back "address unknown". We hope you will remember to let us know of any address changes if you move.

Need information on your disorder, or contact with other families?

We can assist with information, especially for those who do not have internet access, and we can help with contacts here and overseas with families who are in a similar situation to you. Just phone, write or email and we will do what we can. We are happy to assist.

Website update

Our website http://www.ldnz.org.nz (now at http://www.nzordgroups.org.nz/lysosomal/default.asp) has recently been improved and updated with more information and more links. A new feature is the "family stories" page that includes links to family websites. We welcome additions to this page and encourage you to send us your story or details of your personal website for inclusion on the site.

Writing details of their experiences has been found by many families to be a very therapeutic exercise. It often helps to put this aspect of their life into perspective. New families also benefit from the opportunity to read the experiences of others.

Fundraising

We continue to have some modest success in raising money but it is a hard slog. Gains made in recent months include:

$500 from Genzyme Therapeutics for Admin costs.

$1,250 from the Life Sciences Network for witness travel costs for the Royal Commission on Genetic Modification.

$500 from The Big Chill Bar and Café, for general purposes.

A wonderful Christmas bonus was advice of a $5,000 grant from the Scottwood Charitable Trust. Special thanks to Viv Hill of the Batten Support Group for her initiative in pursuing this grant.

Submissions to the Royal Commission on Genetic Modification

The process of gathering together the information for our submissions and presenting it to the Commission, was a major undertaking that dominated much of LDNZ's work in the last 3 months of 2000.

On Wednesday 13 December we made our presentation to the 4 Commissioners. The LDNZ submission was presented by John Forman, and he also referred to his family's experience with Mannosidosis and their adult twins, Timothy and Hollie. Sharon Kortas also spoke of her experiences with her daughter Michelle who died of Batten disease at two years of age. Jenny and Paul Noble spoke of their experiences with ML3 (Pseudo-Hurler Polydystrophy) and their two affected teenagers, Hayden and Sarah.

We were fortunate to have the assistance of Multi-Media Systems Limited who donated their time to put the presentations into Powerpoint format, and gave us technical support on the day.

Closing submissions are yet to be done, and we will prepare those in February. We hope our efforts will persuade the Commission to accept the importance of continued genetic research to solve the problems of these and other rare disorders.

You can read our submissions and a verbatim transcript of our presentation on the Commission's website at http://www.gmcommission.govt.nz/inquiry/appendix_a_revised.html  (Link no longer active - Jan '09)

All the very best to you and your family for a very good New Year

John Forman
Chairperson