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turned out to be cancer – a gastrointestinal stromal tumour (GIST). I am currently on a three-year course of chemotherapy and due to cancers being a higher risk for those with NF, I have yearly mammograms too. Since the diagnosis of GIST, I have more pain, especially in my legs but I try not to think about it too much. My oncologist thinks the chemo drugs may be contributing to the pain, but this will be reviewed once I finish the chemo treatment. It was great to be introduced to MDANZ once I found out they cover our condition! Jane Hazlett, my Fieldworker, is fantastic and she has helped me in so many ways. Jane is working with us all from organising me a new taxi card to arranging counselling sessions for Jessica. I find Dr Google a great place to learn more about NF1 and there are some awesome support groups on Facebook. My one piece of advice when dealing with health professionals is to take a pad and pen so you can write their answers or notes down – you’ll find you will end up knowing more about the condition than they do! My other piece of advice is to focus on having a ‘never give in’ attitude, and surrounding yourself with others who have the same. HEEDING MY MOTHERS’ ADVICE Research Grants 2022 Neuromuscular Research New Zealand is once again accepting funding applications for research relevant to New Zealanders living with neuromuscular conditions. Proposals most likely to be considered will be those which address standards of care (including best and/or innovative practice in supporting people with neuromuscular conditions); effectiveness and/or cost benefit of service delivery modes and interventions; prevalence and incidence of neuromuscular conditions; and proposals which extend existing research into treatment and cures. Research of a preliminary nature with the intention of developing further proposals for substantial financial support from elsewhere will also be favoured. Closing date for applications is Friday 28th October 2022 and we hope to advise the outcome by mid-December 2022. Melissa’s three youngest children, Michael (left), Jessica and Reuben. Register your application in advance by emailing nrft@mda.org.nz or go to the MDA’s website www.mda.org.nz/Our-Research/Apply-for-Funding