Fighting ALS, Fueled by Faith

In my last post I mentioned we were going to Kauai. Just returned after five days and let me just say that Hawaii never disappoints. The natural beauty and aloha spirit were abundant during the trip and once again reminded me of just what God can do. If He can create all that we saw on that beautiful island then He can cure ALS. If He will boils down to how we fit into His story and not the story we have written for ourselves.

But … No matter what, we have a role to play. In my journey with ALS so far there has been one organization that has helped me immensely with disease specific information, support and resources. It is the ALS of Nevada. Their mission is to support ALS patients, caregivers and families in dealing with this disease. They were really the first point of contact for us right after we got the diagnosis. It was a lifeline. Since then we have fast tracked all of the things we never even considered needing based on their suggestions. They have visited my home and done everything from respiratory evaluations to mobility suggestions to physical therapy recommendations. They are equipping people afflicted with this disease to fight.

On October 26, 2025 the ALS of Nevada has a walk to raise funds. Some of my dear friends from organizations I have worked with and also my workplace have put together a team to support the walk. There are actual walking in person opportunities, virtual walk opportunities and also donation only opportunities. If you go to the ALS of Nevada page and look for the ALS walk on October 26, you can sign up for a team. Our team name is H2hOpe. This name is a play on both our careers in water management and innovation while also focusing on providing hope to those who are affected by ALS. I will be walking along side those that are there. The bottom line is that you can know if you have a heart pull toward supporting, that your funds will go to a really good cause.

We are starting to get a rhythm, which is a blessing. We are adjusting my supplement regime this week to help with unwanted symptoms. We are starting the new and very costly medication tomorrow – prayers for that. We are focusing on what can be versus what can’t be. We are so very thankful for all of your love and encouragement in this journey. Make the very best of every day and every opportunity!