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4 | InTouch FEBRUARY 2022 NEWS ROUNDUP An amazing announcement in 2021 was the introduction of the new FA App, an information and connection tool available for free on your phone. Its purpose is to connect and empower individuals with FA worldwide so we can all participate meaningfully in finding a cure for FA. The App has many excellent features keeping people with FA and their friends and family up to date and by allowing community members to: • Connect with one another How do you live with Friedreich Ataxia, stay optimistic and have hope for your future? FARA NZ Update • Read the latest FA news, stories and blogs • Access practical information in the very useful questions and answers section. For example, “What kind of standing poles are best for people with FA? What are the benefits of a recumbent trike?” • Utilise all kinds of useful tools like appointment trackers and gratitude journals. Having so much useful information in one place makes it so easy to keep up to date with FA news. The blogs are practical and encouraging, giving advice and support on how to live the best life possible. Download the App now and share it with all members of our broader FA community! You can find links to the app stores at www.theFAapp.org or you can search for the ‘FA App’ in either AppStore or Google Play. FARA NZ wants to ensure New Zealanders with FA have the ability to participate in research in NZ. In the last two years several positive steps have shown we are on the right track. FARA NZ supports a travel fund to enable New Zealanders with FA to attend the CBR Neurogenetic Research Clinic at Auckland University and participate in FACOMs research, a natural history study of FA. Clinic appointments include both physiotherapy and occupational therapy assessment, follow-up advice and collaboration with local health clinicians. The NZ clinic is an important milestone as this is where clinical trials for FA treatments will occur as scientific research progresses. Last year young adults with FA participated in a clinical trial of Vatiquinone through the Auckland University Clinic. The New Zealand Neurogenetics Research Group is a member of the Collaborative Clinical Research Network in Friedreich Ataxia (CCRN) and the Ataxia Stem Cell and Gene Therapy Consortium, global groups working together to advance treatments and clinical care for people with FA. For more information about the clinic or to ask questions, please email the clinic coordinator Ashleigh Baker cbr.nrc@auckland.ac.nz In 2021 FARA NZ contributed $35,000 to FA Research from funds raised here in NZ. A huge thank you to everyone who participated and supported our two main fundraising events: The Global Ataxia Ride and Lend Us Some Muscle Campaign. These were fantastic events raising awareness and funds for FA research. If you would like to get in touch with FARA NZ please email enquiries@fara.org.nz. We would love to hear from you. Dianne Boon Chairperson FARA NZ www.fara.org.nz Special General Meeting Notice to the Members of the Muscular Dystrophy Association of New Zealand Incorporated. The National Council will be convening a Special General Meeting under Rule 17.4 of the Constitution on Friday 11th February 2022 for the purpose of amending the current Rules of the Association. Details of the specific amendments and proxy voting details are available at the following locations: www.mda.org.nz/Members-Area/News info@mda.org.nz Freephone: 0800 886 626 (call for a copy to be sent to you)