02/12/2026
I'm very excited to share this correspondence with you from Alex Fielding. For those of who don't know, Alex is one of board members. Alex also has F.A.R.A. He has been battling this illness most of his life. A portion of the money that you donate every year at our Night of Entertainment and Golf Tournament goes to F.A.R.A for research. F.A.R.A. has made great strides over the last few years in finding a cure for this illness. Alex has benefited from all of these new treatments that have slowed the progression of his illness. Alex could not make our first Rock N Jock meeting because of a new treatment, not available in the United States, hasn't been approve by the FDA yet. So the Friedreich's Ataxia Research Alliance has sent Alex to Australia for this ground breaking treatment. Here is the emailed I received from Alex.
Hello from Australia!
I hope y’all had a fantastic Christmas and relaxing New Year. Unfortunately I won’t see you this month for good reason; I’m currently in Sydney until mid-FEB participating in a FA drug trial! This drug is very exciting for the FA community. The GeneTac technology was developed by a researcher years ago with funding from a FARA grant – so the money we raise and use to fund research, has now evolved into a meaningful FA-specific treatment! Read more HERE. Essentially this drug overcomes the genetic mutation to allow my DNA to make normal levels of frataxin, the protein that is low in FA. Unfortunately the company has hit bureaucratic delays with the FDA to open clinical sites in the US, so they sent me over here to keep moving along. I’m staying at Bondi Beach (yes a few blocks away from the shooting) – it is summer here, sunny and high 80’s so the timing was perfect to escape the New England winter. This trial is still Phase 1, dose escalating, so they are slowly increasing the dose to find a good therapeutic window that does not cause any side effects or other safety issues. I had my first of four weekly IV infusions the other day – unfortunately I didn’t have a Popeye+spinach reaction, but no negative issues so far. Just a lot of blood samples, a few muscle biopsies (ouch!), and lots of evaluations for me, but I’ll get some time later this month to explore more.
Unfortunately the drug from PTC Therapeutics that I mentioned last year was rejected by the FDA in SEP – the drug was safe and well-tolerated and improved some neurological sub-scores, but didn’t improve the comprehensive score the company hypothesized so the FDA only focused on this (despite being able to show flexibility in their review by law…). The FA community was disappointed but not surprised since the data wasn’t as strong as others. What is most hopeful, is that PTC is still involved with FARA and exploring how they can move forward with the FDA. That is noteworthy – PTC has other programs and most companies in this position would drop FA and move on – but they see a path forward with FA and are strongly committed to the community. It is very encouraging and unique!
That’s the big FA updates. On a personal note, I was definitely exhausted and burned out at the end of last year, so having almost 6 weeks across the world is the perfect chance to reset. I had a kangaroo burger today – the flavor was OK, I wouldn’t recommend. I’m also learning the rules to cricket, which is now my preferred sport to nap to! I can’t wait to see y’all when I’m back and share all the fun stories of my travels. And hopefully realizing some minor improvements in my movement and coordination after the trial. The exciting part – typically companies invite Phase 1 participants back for open label extensions, so if they start that in the US later this year, I should be invited back to continue getting the drug while they work with the FDA! My phone and email work over here – just a pain with the time difference (and sorry for the OOO auto-replies – our customers are relentless!). Cheers to everyone and see you soon!
Thanks,
Alex
God Bless everyone who participates in our event every year. This is your money at work. There is light at the end of the tunnel for a cure for F.A.R.A. So please join us again this year to help raise more money for this worthy cause!
Love you all!
Steve
