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NEWS UPDATE The CBR Neurogenetic Clinic at the University of Auckland is commencing a phase three clinical trial of elamipretide in people who have mitochondrial disease caused by mutations in their nuclear DNA. If your mitochondrial condition is caused by any of the following genes, the clinic wants to hear from you! POLG1/2 SSBP TWINKLE MGME1 (C10ORF2) TYMP DNA2 DGUOK ANT1 (SLC25A4) TK2 SUCLAG1 RRM2B SUCLA2 RNASEH1 MPV17 To find out more about this study visit www.clinicaltrials.gov or email Miriam Rodrigues on nznmdregistry@adhb.govt.nz Do you have mitochondrial myopathy? In addition to the core mission of raising myotonic dystrophy awareness among the general population, many members of the Global Alliance for Myotonic Dystrophy Awareness are also leading efforts in two specific areas of focus for 2022: 1. Awareness and education among clinical care teams. Myotonic Dystrophy Awareness Focus for 2022 Calling all members with FSHD (facioscapulohumeral muscular dystrophy). We would like to connect with you! There is a new Facebook group set up titled “FSHD New Zealand”. You can join by searching this term on Facebook, or heading to www.facebook.com/ groups/fshdnz/ The goals of this group are to connect, share, and build the FSHD on Facebook 2. Clinical trial readiness for participants. Read the full press release at www.myotonic.org/global-alliance- dm-awareness-announces-areas- focus-2022. capacity for self-advocacy. To achieve this we need to understand who is out there and what the similarities and needs are. Looking forward to meeting you online! Comfort Cough The Co fort Cough is an excellent easy to use controls. It can be set up by a clinician in auto mode, and used in the home by the patient or caregiver. breathingandmedical.co.nz | solutions@breathingandmedical.co.nz | 0800 335 333