Brian's Journey

NJASAP brothers and sisters:

As many of you are aware, I have been diagnosed with Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s Disease. ALS is a degenerative neuromuscular disease, that started with my breathing muscles and has progressed into all four limbs and my bulbar region (mouth/throat). Over time, the motor neurons will die in most voluntary muscles, the muscles will atrophy any will waste away. ALS is always fatal (average lifespan is 2-5 years after start of symptoms). While currently I am functioning fairly normally – I get winded and tired easily – eventually I will need to use a wheelchair, and may need a ventilator and feeding tube as I become more and more paralyzed. There are many tools and medical interventions to assist with mobility, breathing, communication, taking food/water, etc. Some of these will require modifications of our home, switching my car to a handicapped-accessible van, skilled in-home care, or institutionalization. Care costs can run to hundreds of thousands of dollars per year – just depends on the individual patient. Many of these costs are covered by insurance, but obviously, not all are – especially the home modifications.

During my 20+ year tenure with NetJets, I spent 18 as a Union volunteer. I held many positions starting with Volunteer Coordinator and working my way through the ranks to EBoard member, Negotiating Committee, and Chief Steward. Among my proudest projects were negotiating and implementing the 2010 Voluntary Measures, the NJA-NJI Integration, the numerous arbitrations I presented (or sat on the Board), the tri-party ASAP Safey Committee, and helping negotiate, ratify, and implement the 2015, 2018, and 2020 Agreements. I also hold the record for most picket events attended – prior to 2023. There are few corners of this Union I haven’t touched at some point in time, having worked with countless amazing volunteers. I know that my work has positively affected the lives of all NetJets pilots. As such, many pilots have asked how they can help me and my family in this journey ahead. For most, it’s not practical to come help at my home, but they can send money to help cover expenses not covered otherwise. We would certainly appreciate the help!

This disease is different for each patient and we don’t really know what course it will take for me. Depending on my particular disease, we may have more or less need (the Union has negotiated good insurance for the first 3 years of disability). I’ve spoken with my family and we are committed to using any funds donated for extraordinary care costs (such as home modifications, ramps, home care, etc.). If more is donated than needed, we will share the extra funds with the ALS Association or a similar group that serves ALS patients and their families. Also, we will donate any equipment (walkers, chairs, lifts, etc.) to an ALS Association loan programs so other ALS patients can benefit from gently used equipment as progress through their disease. Thanks for your consideration!

Sincerely,

Brian