Blog #30: Migraine Foundation Aotearoa New Zealand has launched

After months of work, and together with 2 other co-founders, I’m thrilled to announce that New Zealand’s only migraine not-for-profit has officially launched.

It started with an idea. To share my experience of living with migraine to help others living in New Zealand struggling with this invisible disease. I was nervous. I’m not a particularly extroverted person, and the thought of letting people – both those close to me and strangers – know about how significantly migraine impacted my life made me nervous.

But I’m so thankful I put on my brave girl pants and started Migraine Down Under.

Over the past two years, I’ve learnt so much about migraine, and connected with so many others also living with migraine. Over a year ago I joined the Migraine World Summit copywriting team, which I now co-lead, and joining the Summit has been an incredible opportunity to connect with global leaders and advocates in the migraine world.

Through writing the blog I also connected with two women who share the same drive and motivation to ‘do something’ about the pretty depressing state of migraine care in New Zealand. The lack of access to new medications, support, treatments, information and research exists for myriad reasons. Some areas require a bit of work to improve; others feel like insurmountable challenges, but challenges that Migraine Foundation Aotearoa New Zealand is ready to address.

Dr Fiona Imlach and Suzanne Vale have joined me in establishing Migraine Foundation Aotearoa New Zealand. We’ve been working through the requirements to become an incorporated society and we incorporated on 21 March 2022.

The best way to introduce you to Fiona and Suzanne are through their bios from the Migraine Foundation Aotearoa New Zealand website:

Dr Fiona Imlach

Fiona Imlach is a public health physician with a PhD in epidemiology. She completed her medical degree at Auckland University and worked for several years as a hospital doctor and general practitioner before training in public health. She has worked as a researcher in various settings and on a range of topics, including primary health care, inequalities, child poverty, mental well-being, alcohol and cancer.

Fiona has had migraine attacks since a child but these became frequent and severe in her mid-late twenties. Having tried many different therapies, she currently manages her migraine disease through a strong commitment to sleep, healthy eating, exercise and connecting to loved ones and nature; migraine attacks remain frequent but less severe. In 2020/21, she tested out the impact of walking Te Araroa (New Zealand’s ‘long pathway’ from Cape Reinga to Bluff) on migraine, discovering it was possible to walk 3,000km with migraine disease, but walking wasn’t a cure.

Fiona lives in Wellington with her partner Tony and can often be found on weekends in the Remutaka Forest Park, doing pest control and monitoring wildlife.

Suzanne Vale

Suzanne is a finance lawyer who moved to New Zealand from Melbourne, Australia in 2020. She has worked as an Australian legal practitioner and also founded her own business, writing tender submissions and other documents for architectural and other design disciplines. She also owns and runs a co-working space in Collingwood, Melbourne. Prior to becoming a lawyer, Suzanne held various positions in the Victorian Department of Education and Training.

Suzanne was diagnosed with migraine in 2011. Her diagnosis provided the impetus to leave full-time employment and begin working for herself. She has volunteered for Migraine and Headache Australia since 2020, and when she’s not working or volunteering, you’ll usually find her out on the water sailing with her partner Cam.

As we establish a new not-for-profit, I’d like to acknowledge those in the New Zealand migraine world who have come before us.

For a number of years from 1990, the Headache and Migraine Foundation, also known as the New Zealand Migraine Suffers Support Group, was a registered charity fun by Annette Hallam. I reached out to Annette late last year, keen to hear about her experience of running a migraine charity in New Zealand, but was sad to hear she passed away a couple of years ago. I did however have a great phone call with Annette’s daughter, who told me about some of the work Annette did and how involved she was with connecting and supporting people with migraine in New Zealand.

A member of the Migraine Down Under Facebook group also loaned me some of the old support group newsletters, which provided an incredible snapshot of some of the challenges and issues for people living with migraine in the 1990’s and early 2000’s. Some of these challenges we no longer face, but sadly some of the same issues we’re still battling with today.

Seeing the work Annette did, together with a team of others – including branch leaders throughout New Zealand – made me optimistic for what our new foundation can achieve. There have been so many advances in migraine care and treatment over the past few years, and it’s a time of hope for all of us who live with migraine.

So many of you have supported this blog, so I’d love you to support New Zealand’s only migraine not-for-profit. Our website is live and we have some exciting projects earmarked to start.

Visit www.migrainefoundation.org.nz

In terms of this blog, I’m not sure what my plan is. This is my first blog post for 2022 because I’ve been spending a lot of time working on establishing Migraine Foundation Aotearoa New Zealand, plus my regular freelance writing gig to make sure the bills are paid. I’m switching over the social media links to go to the Migraine Foundation Aotearoa New Zealand social media pages, so you’ll still find me there. I’ll be sure to update you when I’ve decided the future of Migraine Down Under.

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Blog #29: Thanks for sticking with me for another year