To apply to our current open position, go to Advanced Caregiver position.
This site is about living with ALS. The above picture is of my grandfather and his family, who farmed on the Front Range of Colorado. They were the kind of strong you can only get from being hardworking, innovative, and tenacious. You need these farmstrong traits to be successful in tackling a disease like ALS.
My wife and I aspire to be farmstrong as we devote our scant free time to these ALS-fighting initiatives:
- My wife and I are working with I AM ALS, an amazing organization making serious progress on the initiatives we care about most, such as access to drugs that work, like NurOwn, but that are stuck in the pipeline for absurd reasons.
- We are also working with R1, a group of ALS warriors formed by Sandy Morris just before she headed up to heaven.
- I have been working on some mapping projects using Esri technology:
- You may have seen my previous projects, such as my Act for ALS Senate cosponsor tracking map or my Act for ALS House cosponsor tracking map.
- My wife has been fighting for patient access to NurOwn and other drugs that work since 2016. Join her fight on her Twitter feed (join AZ Latina too–a strong NurOwn fighter!) and join the No More Excuses Facebook group. We’ve found the main reason these drugs aren’t available is because we haven’t had a strong ALS advocacy organization until recently and the drugs are created by small pharma, which doesn’t have a lot of money. No one understands why, especially now that the FDA understands that NurOwn works on some ALS patients and is safe, they won’t exercise the regulatory flexibility they promised they would and approve NurOwn. Some theories discussed by orgs for FDA foot-dragging are antisemitism (NurOwn was developed in Jerusalem) and/or a vendetta against a now-very-critical ALS community. Who can know what their bizarre and cruel motivation is for dragging their feet on this drug that looked promising all the way back to 2013.
- My wife has been following Dr. Bedlack’s reversals and tracking the supplements and practices that are used by multiple reversals. Here is her YouTube reversal playlist.
- I’m working on a project to help folks stay in motion. For me, staying in motion helps to minimize the impact of this disease. For example, I work with a personal trainer to stay in motion, which helps with joint health, range of motion, and overall energy management. We’ll be sharing videos of my workouts soon.