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SUMMER 2024 InTouch | 3 NEWS ROUNDUP Denise’s diary Denise Ganley, Member Services Advisor, shares her recent advocacy and awareness work with us. In the past few months, I’ve continued to meet other support group leads for Rare Disorders. We have asked for funding for Vamorolone (alternative to Prednisone) to be raised with Pharmac now that funding for Deflazacort has been turned down, and we continue to work with other partners looking ahead for treatments that are on the horizon. I’ve had a meeting with representatives from Sarepta Pharmaceuticals about how we can connect our members to research and clinical trials. Sarepta is working on a number of LGMD types, Duchenne Muscular Dystrophy and CMT. You can read more about them at www.sarepta.com and see clinical trial information at www.clinicaltrials.gov . We are continuing to connect members with one another via our online Zoommeetings for particular conditions. Some groups are meeting on a regular basis, including FSH and IBM, and we recently held a CMT one which we expect will also become more regular. Looking ahead we are going to host another one for Myotonic Dystrophy and we are open to any suggestions for other conditions. I also did my usual lecture to University of Auckland nursing students to give them some information and personal insights into living with a Neuromuscular Condition. The students are always attentive and have plenty of questions. I’ve attended two online DPO Coalition meetings and another one in Wellington. Through these meetings In Memoriam We would like to extend our heartfelt sympathies to the families of MDANZ members we have sadly lost in the past months... Andrew Scott 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’! we continue to advocate for the big issues that affect our membership, and it was great to have another MDA representative join the Coalition – National Board Member, Scott Boyle. Please like and follow our Facebook page @MDASOUTHISLAND for branch updates. South Island Te Waipounamu Branch Events 2024 2024 has seen a significant increase in members attending coffee groups and events around the South Island. So far this year we have held 66 coffee groups, reaching over 600 members and several successful events. We recently had Anna and Brooke from Lime Real Estate join us at the Rangiora Coffee Group to present us with a $500 donation. Many thanks to Bruce Dodd for organising it. We would like to thank our supporters for funding the coffee groups, and volunteer members for running them. Above top-bottom: Rangiora Coffee Group with Lime Real Estate. Dunedin Coffee Group with Lisa Mora, South Island Branch Fieldworker.