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 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. Part of the I AM ALS initiative is to bring PALS together for many reasons, not the least of which is to be a bigger force in getting to a real treatment TODAY. As part of this, I’m developing a survey to collect data on where PALS have lived throughout their lives. We want to understand how environmental factors may have played a role in causing this disease.
- 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.
- We’ve been compiling a list of other tips and tricks and are looking at the best ways to share out that information. For example, we (and our friends!) have been noting, on our travels, which hotels are ALS friendly (have beds with clearance for hoyer lifts, have roll-in showers, and so on). One of the most important tips we have is that there are things you can do to minimize the impact of this disease, despite what you may hear to the contrary.
- I’m using my 25 years of mapping experience to help the ALS Association (Golden West Chapter) use Esri maps to maximize care resources and identify where care is needed most. To see some of this work, see this story map and this video GIS for Care, Cure, and Community.