Research is ongoing throughout the world to find treatments and eventually a cure for FA.
In Australia and New Zealand that research is coordinated via fara (Friedreich Ataxia Research Association).
fara is a not-for-profit organisation whose sole purpose is to fund this research.
You can visit their website to understand more about their efforts and the work they sponsor here. While you’re there, pop in your email address and they’ll add you to their mailing list so you’ll always be among the first to hear about FA research news in Australia.
We ask that you make fara the beneficiary of any FA fundraising activity you can do, so this research work continues. Contact them (click here) and they’ll provide any assistance they can to set up your fundraiser.
If you can make an individual donation you’ll see a big “Donate” button on the front page of their website here.
FARA (USA):
fara in Australia coordinates fundraising and research funding closely with the Friedreich Ataxia Research Alliance in North America and together they play a leading role in funding and coordinating FA research globally.
FARA USA have a website with comprehensive information on the condition, sufferers, families, North American fundraising and much more.
Of most interest though, is an up-to-date chart they maintain showing the status of all trials that they’re aware of, globally. You can see it here.
RTA408, later known as Omaveloxolone, now Skyclarys
We are very fortunate in Queensland that Susanna Mantovani worked as Research Fellow at the Wesley SBMS for apart from Susy’s focus being FA, she is a gifted educator. Susy recently prepared a short presentation that explains what goes wrong inside an FAer’s cells and what RTA408, at that stage in clinical trial, aimed to achieve to bypass these problems.
That drug was subsequently named Omaveloxolone and there was a clinical trial site in Melbourne. On February 28th 2023 (Rare Disease Day), it gained formal approval from the USA’s FDA (Food and Drug Administration). Since then it’s been commercialised as Skyclarys and the company who developed it - Reata - have been bought by Biogen, who have experience in getting such approvals internationally. It has since been approved in the EU and UK, and approval has been submitted to the TGA for Australia.
I cut Susy’s presentation into 3 x 5 minute sections to reach a size for each acceptable to YouTube. You should watch all three.
IARC 2015:
At the end of March 2015, FAN contributed funding for Anna Nolan (Clinical Nurse Coordinator at the FA Clinic, RBWH) to attend IARC in Windsor UK.
The International Ataxia Research Conference was the biggest gathering ever of researchers in ataxia. More than 300 delegates attended from all parts of the world including several from Melbourne and Anna from Brisbane.
Soon after she returned, Anna made a presentation to FAN of highlights from what she learned there. We videotaped that presentation and here it is. For convenience (in file size for uploading and bite-size viewing), I’ve separated it into four parts, each about ten minutes long.