DOCUMENT

I hope that you managed to take a break and have come back refreshed, relaxed, and recharged for the year ahead. For many New Zealander’s, like me, you probably felt like this summer wasn’t much of a break with the wild weather that hit – especially in Auckland and the East Coast. The spirit of us Kiwi’s is being challenged more and more each year I find! Many of our members face everyday challenges that I, and others, take for granted every day. It’s so rewarding to facilitate the panel of the Bradley Jenkin Memorial fund where we can assist members with grants to help them overcome such challenges – such as Lois and Dennis who share their stories with us on page 12 . The more examples and stories I hear of our members, how you cope, survive, and live your lives, the more I realise that you are all remarkable people. Whether it be that you do interesting, exciting things, have achieved things (like fulfilling jobs, studying, or taking on community service roles), or simply in the little everyday things to keep you going (reading a book, knitting, or spending time with whānau), these ‘things’ are what our lives are all about and what we as members (and as an Association) need to embrace, support, and celebrate. Please do reach out and share your stories with us and if we can help with your ‘thing’ via the Bradley Jenkin Memorial fund, please do apply. January & February have been busy months for the team as we begin working on plans for 2023. This includes collaborating across our rare disorder’s community, with examples such as uniting with other organisations on campaigning for cough assist machine funding (we cover the research piece on page 7 ) , to support for Rare Disease Day, and the recent campaigning for medicines access for Spinal Muscular Atrophy (SMA). I would like to thank the advocacy work our Member Services Manager, Denise Ganley, has done on behalf of MDANZ. I also want to acknowledge our member Fiona Tolich, who features on the front cover. Fiona embodies the true FROM THE DESK Trevor Jenkin National Executive Chairperson Welcome to 2023! Kōrero with Trevor Kiwi spirit and has worked selflessly for others over the past few years with her advocacy work for the SMA community and with Patient Voice Aotearoa. You can read Fiona’s incredible story on page 19 and why she is suddenly calling Australia home. On International Rare Disease Day – 28 February, we will be working with other Associations to kick off the very first Rare Disorders awareness month – calling on Aotearoa to Glow up and Show up for Rare to show support for the 6% of the population living with a rare disorder. Keep an eye out on our Facebook page for further updates and information on how you can support the campaign. Hope you enjoy this issue of In Touch . TAKE YOUR LIFE TO THE NEXT LEVEL... EXPERIENCE THAT LASTS A LIFETIME www.dofehillary.org.nz facebook.com/dukeofednz