September update

Lots of updates to share on things we’ve been up to, as well as details for two events happening later this month.

One step closer to a new drug

This past week, the FDA Advisory Committee voted 7-2 in support of approving AMX0035. This is exciting news and a direct result of the tireless dedication of thousands of ALS advocates–including many readers of this blog–who have been pushing the FDA to approve this promising ALS therapy for over two years.

The Advisory Committee’s recommendation is NOT binding, which means the FDA could still deny approval of AMX0035. We must continue to fight until the FDA makes its final decision by September 29.

We still have a chance to make an impact and help inform the FDA’s decision. You can help by contacting the FDA and asking them to approve this important drug

Americans living with ALS cannot continue to wait for this safe and effective treatment to be available. The FDA must approve AMX0035 as soon as possible.

Raising funds to find a cure for ALS

Later this month, I’ll be participating in two events to raise funds in support of research to find a cure for ALS. The ALS Association Golden West Chapter will host its annual Walk to Defeat ALS. The Honolulu event is scheduled for Saturday, Sept. 17, beginning at 9:30 a.m. at Kapiolani Park. I’ve been asked to give a few remarks before the walk kickoff.

The following week, Saturday, September 24, Orange Theory Fitness (OTF) will host the second annual DriTri fundraiser in support of the ALS Association Golden West Chapter and in my honor. Before my diagnosis, I was a founding member of the Kapiolani studio, working out at OTF three or four times a week, and the DriTri was one of my favorite events. The DriTri is basically an indoor triathlon featuring a 2000 meter row, 300 bodyweight exercises, and ending with a 5K treadmill run.

This version of the DriTri will be a team event and is open to current and former OTF members and their families and friends. The event starts at 10:30 a.m., and I will be there to kick off the DriTri and to cheer my friends as they complete this challenging event.

To help support the ALS Association Golden West Chapter, you don’t even have to walk or participate in the DriTri. You can give to my personal fundraising page by clicking on this link: http://web.alsa.org/goto/orangetheory22

Or, you can point your phone camera to this QR code which will take you directly to the fundraising page. Your contribution is tax-deductible to the extent of the law. Any amount you can contribute to this cause will go a long way to continue the fight.

In-home PT

This week I also had my evaluation with a new physical therapist from Makai Mobile Rehab, a company offering mobile, outpatient PT services which means they’ll come to our home for my appointments which is much easier on me than having to travel to a nearby medical center for each visit. We’re hopeful this will also mean more frequent physical therapy sessions to maintain my range of motion and as much function as possible during this phase of my ALS progression.

Patient Advisory Board

Through her participation in the NEALS PEACe committee as an ALS Research Ambassador, Jen was recently selected to serve on a new patient advisory board for Blackrock Neurotech. The patient advisory group will work with the company’s development team on their Brain-Computer Interface (BCI).

As always, thanks for reading and for your comments and messages – they mean the world to me!