Epilepsy Waikato Charitable Trust

14/09/2026

If you are in the Waikato, you should fill in this survey... https://yourvoicematters.waikatoregion.govt.nz/rptp-2022-2032-proposed-fare-change/surveys/rptp-2022-2032-proposed-fare-policy-review

05/09/2026

Hello everyone. It's that time of year again (AGM time) however it comes as somewhat bittersweet that the trust is having to look at folding due to lack of funding after rapid changes in the funding environment.
Our AGM is happening on the 15th September and we encourage all members (that's anyone who's had contact with us) to attend if they can.
Please see the link for details.

Notice is given that the 2025 AGM of Epilepsy Waikato Charitable Trust (EWCT) will be held on Thursday, 18th September 2025, at 6.30 pm.

23/08/2026

Enrol to vote for this year's general election on 7th November, and make sure the disability voice is counted! Communities that participate are harder for politicians to overlook, and politicians pay attention to people who vote.

As noted by the Disabled Persons Assembly "Every day, decisions are made that affect disabled people's lives... transport, housing, income support, accessibility, education and health services. Our vote helps choose who makes these decisions".

Unlike previous elections, wherein people could enrol to vote right up until Election Day, this year enrolments and updates to enrolment details close at midnight on October 25th. If you would like to get on the printed roll, to get an Easy Vote card and be able to do a normal vote, this needs to be done by October 4th. If you enrol between October 5th and 25th, you will need to cast a Special Vote.

You can visit here (https://vote.nz/enrolling/enrol-or-update/enrol-or-update-online) to check or update your enrolment details.

18/08/2026

Discontinuation: Sodium valproate (Epilim) 100mg crushable tablets

The supplier Sanofi has notified Pharmac of the discontinuation of Epilim 100mg crushable tablets. This is a global discontinuation, and Sanofi expects that stock will be available until the end of November 2026.

Epilim Sugar-Free Liquid, Epilim Syrup, Epilim 200mg EC and Epilim 500mg EC tablets are not affected by this discontinuation and remain available.

Those affected will need to see their health care provider for a new prescription for an alternative before the supply of the crushable tablets ends in November. You must not stop treatment or change their medication without first consulting a doctor.

PLEASE NOTE: Other forms of sodium valproate are still available.

See here (https://www.pharmac.govt.nz/medicine-funding-and-supply/medicine-notices/epilim) for further information. If you have any queries, contact Pharmac at [email protected]

21/06/2026

Parents of Vision Impaired NZ will be providing a workshop tonight (Monday 22nd June) at 7pm on Navigating MSD Disability Supports.

This Income and Benefits Session will be led by Sonja Eriksen from the Ministry of Social Development, and will cover available supports, eligibility, and how to apply.

For more information contact: [email protected] or 0204498829.

Click here (https://d7xju.share.hsforms.com/2nqYriR1HThm7Nm7DwQwkSQ?utm_medium=email&_hsenc=p2ANqtz-8llAJ4rKlYwD2r7blyHDNrisopkAQpKru3j_pl5K5GjEaI8kZqraU6T2BE4cRb4wo4E8stDoB1Mu1rhcqwCmZ_M6uaeGnRfB5OjbxbjoQItR67t9Q&_hsmi=421215402&utm_content=421215402&utm_source=hs_email&utm_campaign=disability_connect_newsletter_15_june_have_your_voice_heard_dss_consultation_starts_this_week_supported_decision_making_workshop_20th_july&utm_term=2026-06-22) to register

11/06/2026

📣 Submissions on the Disability Support Services Bill close at 1pm TODAY.

You may have already seen articles and posts about this Bill over the past week — it’s a big one, and it will shape the future of disability support in Aotearoa. It affects every disabled person, every whānau, and every carer.

Even a short submission makes a real difference. You don’t need to be an expert — just share what support means for you or your whānau.

🟣 How to submit (3–5 minutes)
Submit online here:
👉 https://www.parliament.nz/en/pb/sc/make-a-submission/document/54SCSSC_SCF_BILL_178637/disability-support-services-bill

You can upload a document or just type a few sentences into the text box.

🟣 What you might want to say
You can write about:
- what support means for your safety, independence, or daily life
- how epilepsy affects your routines, work, study, or whānau
- why delays, reassessments, or reduced flexibility are unsafe
- why family care should be a choice, not an expectation

Even one paragraph is enough.

Helpful links that our Epilepsy Advisor analysed to make sense of the legalese in the Bill:
- Disabled Persons Assembly (includes links to resources, as well as their Plain Language Points) https://www.dpa.org.nz/news-and-information/latest-news/disability-support-services-bill/
- Disability Advocate and Lawyer, Dr Huhana Hickey, provides a Simple Submission Template here - https://huhana62.substack.com/p/why-disabled-people-need-to-make?utm_source=post-email-title&publication_id=3789228&post_id=199031891&utm_campaign=email-post-title&isFreemail=true&r=2k6hc1&triedRedirect=true&utm_medium=email, and a Plain Language Breakdown here - https://huhana62.substack.com/p/here-is-a-plain-language-breakdown
- CCS Disability Action have also put together a Submission guide - https://www.ccsdisabilityaction.org.nz/news/dss-bill-submission-guide
- New Zealand Disability Support Network have also provided a breakdown of the Bill, and provided several different submission templates to support people to submit - https://nzdsn.org.nz/make-your-voice-heard-in-the-dss-bill-select-committee/
- This website (https://yeahnahbills.org/) may also help anyone make a submission more easily (thank you Waikato Connect-Ability!)

Ngā mihi nui,
Epilepsy Waikato Charitable Trust (EWCT) 💜

09/06/2026

Our Epilepsy Advisor has organised with a number of libraries in Hamilton to have an Epilepsy display this month (June). Hillcrest Library at Hamilton Gardens was up last week, with Central Library in the city having a display this week, Chartwell Library next week, and Rototuna Library in the final week of June. These displays are simple, child-friendly, and help visitors understand what epilepsy is, as well as clearing up common myths about epilepsy, and featuring a special Hamilton Libraries collection of books where epilepsy appears in the stories.

In addition, an Author Talk has also been prepared at Rototuna Library for Tuesday 23rd June. At this event, Sharon Holt, the author of two books about epilepsy will share short interview moments with Esther, and read both stories aloud. This will be followed by a relaxed audience Q&A. All ages are welcome, and this event is free to attend. Please see the attached poster for more information.

09/06/2026

Blind Low Vision NZ has organised a day of action for today (Wednesday 10 June) surrounding the Total Mobility scheme. The Government needs to know how important this scheme is to the disabled community.

Even though the consultation period has finished, no decisions have been announced yet and so we’re taking co-ordinated action to show the Government how big of a deal this is to the community.

By calling and/or emailing into the Minister for Disability Issues Hon Louise Upston’s electorate office en masse, on the same day, we can show how widely and deeply felt these changes would be. We're taking action to stop the proposed changes to Total Mobility, and the subsidy reduction, and urge Hon Louise Upston to advocate for the people she's meant to represent.

Please contact Hon Louise Upston between 9am and 11am today. Her email address and phone number are in the post shared below. You can call and/or email from anywhere. Anyone who is affected by, or has people they care about who will be affected by, the changes to the Total Mobility scheme can participate!

You can find more information on the proposed changes and the Day of Action (including call and email scripts) at this link: https://blindlowvision.org.nz/news/total-mobility-scheme-day-of-action/

Please let the Minister know how you feel about the subsidy reduction and proposed changes, and how these changes will affect your life!

Today’s the day! We need everyone calling and emailing Minister Louise Upston this morning.

Phone: 07 3765563
Email: [email protected]

The proposed changes to the Total Mobility scheme would result in unnecessary additional costs to the disabled community, including people who are blind, deafblind and have low vision. In our current cost of living crisis, this is simply not good enough.

We'll post an example call script in the comments to help you craft your message. Put it in your own words - your own story is the most powerful!

You can find more information on the proposed changes and the Day of Action at the link [in our bio!/in the comments.]

Let’s show the Government our strength in numbers.

Image description: The text "Today's the day. Take action for Total Mobility. Call and email Louise Upston before 11 am today." against a bright yellow background.

08/06/2026

Registrations for the next Changemakers Programme | Kaupapa Kaihanga Panoni are now open!

Changemakers | Kaihanga Panoni is a free online programme for disabled people and our allies who want to lead change in ways that matter to us and our communities. Guided by lived experience – created for disabled people, by disabled people – the programme supports you to grow your confidence, strengthen your voice, and lead change in your own way.

You can find the updated programme and registration details here:
https://www.yourwaykiaroha.nz/supports/supports-programmes/changemakers/

The next cohort begins on 8 July 2026 and runs through to 12 November 2026. The programme now runs over 20 weeks (rather than 10), allowing more time for whakawhanaungatanga | relationship building, reflection, and learning alongside Changemakers’ other life commitments.

The Changemakers Programme focuses on building confidence, skills, and networks for inclusive, community-led change. Each week includes an online session or resource and a short reflection activity you can complete in your own time. 

01/06/2026

My Life My Voice are hosting, and Spectrum Foundation are funding, an event - Ōkawa - Your Journey, Your Voice, for wahine and tāne to explore the rich traditions of Karanga and Whaikorero.

Any d/Deaf, Disabled, Tangata Whaikaha Māori or person with an impairment can register for 1 of 3 FREE weekend workshops below:
- Karanga for Wahine
- Whaikorero for Tāne
- Fundamental workshops for all genders on the meaning and importance of these practices.

Come along to learn, connect, and grow in a welcoming and supportive environment.

When: Friday 14th August to Sunday 16th August 2026
Where: Raungaiti Marae, 6425 State Highway 27, Waharoa, Waikato
Cost: FREE
(NOTE: Travel costs to and from the Noho are at your own expense)

How to Register
Registrations are still open — spaces limited!
To register, please fill out the form at https://www.mylifemyvoice.org.nz/events. If you are part of a group of people that would like to attend, please contact us before registering.

Here are some reflections from those who attended last year.

Ōkawa Participant Reflection 1:
https://www.facebook.com/share/v/18GzksurLd/

Ōkawa Participant Reflection 2:
https://www.facebook.com/share/v/1CgbbxHsHh/

Ōkawa Participant Reflection 3:
https://www.facebook.com/share/v/1AruHdm5CR/

Natt's Reflection on Ōkawa:
https://www.facebook.com/share/p/14bKiHEfU7a/