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2 Headlines Editor Danelle Clayton Contributors Glenda Kane Mackenzie Kiernan Design The Design Cellar Ltd Cover Associate Professor Deborah Young with Pat Hanly's 7 Grace from the Seven Ages of Man series ISSN 0114-9768 CONTACTUS Neurological Foundation, PO Box 110022 Auckland Hospital, Auckland 1148 Phone: 09 309 7749 Free call: 0508 BRAINS (0508 272 467) Email: info@neurological.org.nz Website: neurological.org.nz If you’re moving, please let us know your new address so that you don’t miss the next issue of Headlines. If you are not a current subscriber and would like to receive this free publication four times a year, please send your details to marketing@neurological.org.nz . DONOR RELATIONS CONTACTS Upper North Island: Theresa Liebenberg – 027 233 0710 theresa.liebenberg@neurological.org.nz Lower North Island: Margie Carter – 021 042 8114 margie.carter@neurological.org.nz South Island: Kim Maunder – 021 642 485 kim.maunder@neurological.org.nz Headlines is printed on paper from responsible resources Kia ora koutou, Helping to grow the next generation of New Zealand’s research community is a key part of what we do here at the Neurological Foundation, and it’s something I’m passionate about. I’m sure you are, too. Distinguished Professor Sir Richard Faull has observed the progress at close range. “Getting students in young and watching them grow is fantastic,” he said at our AGM event in October. With your ongoing support, we can keep investing in tomorrow’s researchers. As a country, we all stand to benefit. Summer studentships are one way for young students to dip their toes into the world of research and find out whether it’s right for them. You can read about a wonderful example of this on page 14. More than two decades ago, Dr Peter Freestone was the Neurological Foundation’s inaugural summer studentship recipient. His career has flourished since then, and he now spends time and energy giving back to the younger generation of researchers. In this issue of Headlines , we’re putting the spotlight on conditions that can sometimes be pushed to the sidelines. We’re happy to welcome Rare Disorders NZ to tell you a little bit more about the reality those living with a rare condition face as they strive for the same kind of progress that happens with more prevalent conditions. Looking back on a busy year, I’m so excited to think about the impact being made every day by researchers across New Zealand. You’ve enabled us to support over 124 active grants involving more than 280 researchers at the moment, and I really can’t thank you enough for your generosity. Like you, I’m confident that great work will continue in labs, hospitals and communities across New Zealand in 2024 as we inch towards much-needed breakthroughs. Wishing you a relaxing break with your loved ones over Christmas and New Year. Here’s to more wonderful progress as we journey together on the pathway to hope. Mā te wā, Rich Easton CEO Message from our Chief Executive Our upcoming events Rare and meaningful The promise of gene editing Living with CMT in the family Gifts of knowledge Rheumatic fever’s hidden neurological toll Hope for Huntington’s? New therapy could hold the key Mentoring the next generation: From summer student to seasoned researcher An alternative treatment for multiple sclerosis? 10 Years on Around the globe Contents 3 4 5 7 8 10 12 14 17 18 19