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WINTER 2024 InTouch | 3 Above: Phil with his friend and MDANZ member, Jacqui. NEWS ROUNDUP Denise’s diary Denise Ganley, Member Services Advisor, shares her recent advocacy and awareness work with us. Part of my role is to ensure that MDANZ maintains its role as a specialist information provider, maintaining clinical networks, revising and updating information, promoting awareness and advocating for improved care standards for the community that we serve. DPO Coalition : Two 3 day meetings (one inWellington and one online). Included a brief introduction to the new Minister for Disability Issues, Louise Upston. Health Research Council Activation Grant : Two meetings RE improving respiratory service outcomes for people with neuromuscular conditions. Pharmac : A meeting with Pharmac officials regarding the funding of Deflazacort which has now been progressed to a PTAC meeting. IBM group : Two IBM online meetings – one of which was with Dr Larry Stern from Arizona. Larry generously gave us his time to talk about IBM and current research. Access research : A meeting with a researcher fromMassey University who is looking into access for public buildings in New Zealand. Minister for Disability Issues : A meeting with Louise Upston and other disability groups ahead of the budget 2024. I encourage you to connect with your Fieldworker and share feedback. Feedback and information on your experiences enables us to collectively help others. Phil McKee rides to raise funds for MDANZ Congratulations to an awesome supporter of ours, Phil McKee, who has raised an impressive $9,500 riding the length of NZ for MDANZ in April. Phil said, “It’s been an amazing few weeks meeting great people, seeing more of our amazing country and being challenged physically and mentally. All the support we received was amazing. It was especially wonderful to have Jacqui (member), who along with Luke her son, inspired us to raise funds, ride with us for part of the last day and be at the finish a line in Bluff.” What an incredible achievement Phil – we are so grateful for your efforts and support! In Memoriam We would like to extend our heartfelt sympathies to the families of MDANZ members we have sadly lost in the past months... Ollie Bunting Brooke Clive Stacey Spence Nate Matthews-Olsen If you would like your family members’ passing to be acknowledged in the In Touch magazine, please email us at info@mda.org.nz Go digital! If you are receiving this copy of In Touch in the post, and no longer require a physical copy or would prefer to read the issue digitally, please let us know and help us save costs (and some trees!). Email us at info@mda.org.nz to go ‘digital’!