Fara NZ Blog
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Friedreich Ataxia Research Association New Zealand (FARA NZ) is a charitable organisation set up to improve the quality of life for people diagnosed with FA, by supporting them and their families and to assist the funding of scientific research to treat this rare neurological degenerative condition.
Fara NZ Blog
1M ago
The Duncan Foundation enables Physiotherapy and Occupational Therapy to be part of the Neurogenetics Research Clinical (NGRC) team involved with the Friedreich Ataxia population. Following on from their appointment with the NGRC team, people with FA are encouraged to register with the Duncan Foundation in order to participate in their condition-specific intervention programme. Watch the video below for more information.
For more details and to register, please visit this link or click the button below: https://duncanfoundation.org/friedreich-ataxia/
Learn more ..read more
Fara NZ Blog
1y ago
Want to be part of the greatest muscle show on earth? Get involved!
REGISTRATIONS ARE NOW OPEN FOR
LEND US SOME MUSCLE 2023!
Lend Us Some Muscle™ is on again and we need you to get Fabulously Flexy, spread the word and help us raise money for Friedreich Ataxia research. It's easy!
1. Go to https://nz.lendussomemuscle.com/lend-us-some-muscle-2023 to register for free
2. Challenge yourself or a group of friends to do something active during May. It doesn’t need to be anything extravagant - do something you already love (walk on the beach?), or try something new (hot yoga!)
3. Then simply flex y ..read more
Fara NZ Blog
1y ago
The Clinical Management Guidelines for Friedreich Ataxia have been updated. You can find the updated information by clicking the button below.
View guidelines
It is important to share the updated guidelines with your General Practitioner, Occupational Therapist, Physiotherapist and anyone else involved in your care.
It is great to see this important document updated in light of new & emerging evidence on how to manage FA most effectively.
If you have any questions, please reach out to us on enquiries@fara.org.nz ..read more
Fara NZ Blog
1y ago
Learning how to manage life with Friedreich's Ataxia (FA) takes time. Reata Pharamceuticals have put together a brochure on Managing FA to help healthcare professionals, FAers, and caregivers.
This information was put together with help from FAers and FA caregivers, and contains a variety of tips for managing FA from exercise ideas to nutrition and general resources.
Visit Connect FA to access the information or click the buttons below to directly access information relevant to you.
If you’re a Healthcare Professional, you can access resources most relevant to you here:
Professional resources ..read more
Fara NZ Blog
2y ago
From the bottom of our hearts, we say…
THANK YOU Legends!
We are so grateful for…
Your fundraising,
Your donations,
Your enthusiasm,
And, of course, your epic flexing muscles! ?
Thanks to you, Lend Us Some Muscle 2022 has been an incredible success.
We have raised $70,914.09 (and counting) across Australia and New Zealand.
The proceeds of the Lend Us Some Muscle 2022 campaign will fund research to help improve the lives of those living with FA.
If you’re interested in finding out more, or adding to the donation total, you can find the NZ LUSM campaign here ..read more
Fara NZ Blog
2y ago
Muscular Dystrophy New Zealand have just published the latest copy of their InTouch Magazine. This issue touches on a range of topics from journalism & disability to online art studios and the latest research on genetic muscle disorders.
You can access the February 2022 issue for free by clicking the button below:
Read Now
You’ll also find an article written by FARA NZ’s chairperson, Dianne Boon, about The FA App on Page 4. Check it out in the magazine or have a read here.
Thanks for reading. If you have something like you to discuss with FARA NZ or if there’s anything you’d like to share ..read more
Fara NZ Blog
2y ago
fara Australia invites FA patients and families to attend the 2022 FA Patient and Family Information Forum!
Hear about the latest FA research, as well as clinical trials and other fundraising/advocacy news.
Time: 5pm - 7:30pm (NZ Time)
Date: 24th February, 2022
Access: Virtually! Register using the button below or follow this link.
REGISTER NOW Presentations by:
Mirella Dottori,
Christina Cor tez-Jugo,
Jarmon Lees,
Nellie Georgiou-Karastianis,
Martin Delatycki,
Adam Vogel,
Ian Harding,
as well as an update from FARA US.
The presentations will be followed by an interactive Q ..read more
Fara NZ Blog
2y ago
Our friends at fara Australia have secured the exclusive screening of The Ataxian through the generous people at Classic and Lido Cinemas.
Rent or Buy Now!
The award-winning documentary spotlights Kyle Bryant, a man living with the progressive genetic neuromuscular disorder, Friedreich Ataxia, and a team of friends, as they attempt the most gruelling bicycle race in the world, The Race Across America.
Stunning cinematography exposes raw, unfiltered emotions juxtaposed against the most inspiring landscapes across America. With purity and grace, the film examines the life of a man aggressively ..read more
Fara NZ Blog
2y ago
At our recent Annual General Meeting, we were privileged to be joined by members of the University of Auckland’s Neurogenetic Research Clinic.
The team updated attendees on the latest research on Friedreich Ataxia and from FACOMS (Friedreich’s Ataxia Clinical Outcome Measures Study). We appreciated the update from Dr. Richard Roxburgh and his team.
Also, a huge thank you from FARA NZ’s board to those who attended the meeting and we hope you enjoyed the presentation.
You can take a look at the slides from the presentation below ..read more
Fara NZ Blog
2y ago
We’re so proud and excited to share the Mitchell family’s amazing fundraising efforts to help find a cure for Friedreich Ataxia.
Flynn Mitchell and his family are taking part in the RideAtaxia Global Challenge and have a goal of raising $15,000 - they’re just about halfway there!
Let’s support them to reach their target with all funds being donated to FARA NZ to support research efforts to find treatments and a cure for FA.
Support Team Flynn and stay up to date with the challenge by clicking the button below:
Support Team Flynn!
You can also visit Team Flynn’s fundraiser by following this lin ..read more