“Leading the Way” Newsletter – December 2022

Writing an annual newsletter always gives us an opportunity to reflect on the year that was. 2022 was a somewhat busy one with meeting new clients, giving lots of epilepsy awareness talks and engaging in social activities. In other words, it is now business as usual although we must all be aware that Covid is still present in our communities.

Last year we produced a book titled, “Understanding and Managing epilepsy: an introductory guide”. This book has proven to be useful not only to adults who have epilepsy but also to people who are interested in the topic. Because of the popularity of the book, we are now fund raising for a second reprint.

To date we have produced four books (Ben’s Buddies, Ariana and Jack, Understanding and Managing Epilepsy and the Seizure Diary) and we are hoping to secure funding for a fifth book happening next year. If you would like to make a donation towards reprinting our books or funding our new book, that would be most appreciated. You may like to make a donation online.

We believe that the books are an important way of sharing information on epilepsy. It is our gift of knowledge to you!

On behalf of the EWCT trust board, Maria Lowe, our epilepsy advisor, has made a submission to parliament regarding the Accessibility to New Zealanders Bill. That submission has yet to be heard.

(The Accessibility Bill for New Zealanders: This bill establishes a new legislative framework that addresses systemic accessibility barriers that prevent disabled people, tāngata whaikaha and their whānau, and others with accessibility needs from living independently and participating in all areas of life.)

Epilepsy is a complex medical condition that still creates a certain amount of prejudice, stigma and fear within the community and within government departments. In Maria’s submission she has highlighted the barriers that many people living with epilepsy currently face and she is hoping that, in the future, all people living with epilepsy will be afforded the same rights and protections that those living with other disabilities will receive through the Bill. It is about supporting the “whole person” in a social model of disability. Not everyone is disabled by epilepsy but there are certainly challenges that many people face through having the condition. These could include the loss of a driver’s licence, unemployment, underemployment, managing memory loss, social isolation as well as medical challenges. Maria understands the many challenges as she closely works with people in the community and so the submission is an opportunity to bring epilepsy out from behind the shadows and for a national discussion to be had.

For the “Epilepsy Awareness Month” in November we looked at those professional people in our community who are part of our care team. We often just take note of our neurologist or paediatrician but, in fact, there are many people who are involved in our care in some way or other.

You may wish to keep a list of people in your epilepsy care team and their contact details, using the template below:

In September we awarded two Epilepsy Hero Awards. This award goes to those who have shown wonderful support to EWCT in some way. These awards were presented by our patron, Tim MacIndoe.

We also awarded two lifetime memberships. Both Bryce and Jill are volunteer trust board members

We would like the opportunity to thank our many funders and your donations. We wholly rely on community support as we are not government funded. We are a charity and, as such, we are answerable to the Charities Services and to you, our clients. Our aim is to help you along the way in your epilepsy journey as well as possible.

Maria Lowe, will be working up until Friday 23rd December and will be returning to work on Monday 16th January 2023.

Please take care over this Christmas/New Year season and we will see you again next year. Enjoy what Hamilton has to offer if you are not going away on holiday.

Last modified: December 7th, 2022 by EWCT | Posted in: Newsletters