Thursday 25 October Patient Panel, Scientific Symposium Level 5, Murdoch Childrens Research Institute, Royal Children’s Hospital Melbourne 4-6pm Come along to the patient panel session of our annual fara Friedreich Ataxia Scientific Symposium. Held from 4-6pm, you will have the opportunity to hear presentations from Ron Bartek, President FARA (USA), Jennifer Farmer, Executive Director FARA (USA) and […]
Here is the presentation Chronic sorrow From grieving to gratitude from Dr Kirsty Ross, PhD Senior Clinical Psychologist Massey University. She has also attached some helpful handouts on 10-ways-to-develop-resilience Accepting Uncertainty Calming Technique Mindfulness and Letting go What is Mindfulness
If you would like to contact Joe for more information on this device you can email him at jboon77@gmail.com
Hello everyone, Come on Kiwis, get behind us and SHOW YOUR MUSCLE. Registrations are now open for FARA’s Lend Us Some Muscle 2018. We are encouraging New Zealanders to support this fundraising event. Money raised will help establish the first clinical gene therapy trials in Australia – a giant step towards finding a cure for […]
Everyone should have received there Census codes and this is the first time we can do them online. Please remember to full your Census out as we require accurate figures so the Government can allocate the correct funding to our local DHB’s. It is important that people with FA fill out their Census so we […]
Dear FA Patients, Families and Caregivers, Reata and FARA are pleased to announce a Webinar to update the FA community about the ongoing Phase 2, Part 2 of the MOXle study for RTA 408, and provide a review of Phase 2, Part 1, which has been completed. There will be two Webinars – 1/31/2018 and 2/1/2018. […]
A few days ago the Australian MOH announced 1.2 million dollars of research funding for the Murdoch Institute in Melbourne for ATAXIA research. This is incredible and very exciting for us. This money will support a number of research studies. Media release. Ataxia research funding 2018
Here is a interesting article for those who have thoughts on sharing anonymous, aggregated data within the rare disease community for future research and how to go about it. https://raremark.com/friedreich-ataxia/articles/how-is-the-friedriechs-community-making-a-difference–754?
https://raremark.com/friedreich-ataxia/articles/grant-awarded-for-friedreichs-ataxia-research–730
