Rob Fanfelle Life Journey
FAQ - Things to know about ALS and Robs condition
Message from Rob:
Let me start with *I love you*. You are part of my extended community and my chosen family. We likely haven’t spent much time together lately since I significantly shrunk my pod of close contacts during the pandemic and frankly didn’t hone my skills at reaching out and maintaining connection with my community. I have suffered as a result and now this diagnosis has made me feel I have lost the ability to rekindle my relationships which I realize I took for granted. So thank you so much for taking an interest in connecting with me.
Are you sure its ALS?
He has been seen by doctors in two of the top ALS centers of excellence on the West coast: Forbes Norris / CPMC Sutter and at UCSF ALS center. They have determined he is on the ALS spectrum where one institution gave a diagnosis of ALS and the other a diagnosis of PLS. In the end he has a motor neuron disease which is destroying his upper and likely lower motor neurons. It is not communicable. The root cause for his disease is unknown (ex. viral, auto-immune, general inflammation) but he is trying to get more testing to help guide toward any suitable experimental trials/treatments. He does not have any of the genome mutations commonly associated with ALS so his manifestation is sporadic not familial.
What is the prognosis?
His initial ailments involve his bulbar region where his voice is weak and rough, breathing is weaker, and he has occasional trouble swallowing. He also has widespread twitching/fasciculations and sporadic cramping across his arms and legs. As of November 2024 he started with left foot drop. It is expected that he will continue to lose use of all his voluntary muscles from his extremities all the way to his head. He will likely lose his voice soon and will eventually need a feeding tube and support breathing via a bipap machine. There is no cure and it is unknown how quickly he will decline: If he has bulbar-onset ALS then the average lifespan is approx 2 years. If PLS (upper neuron only) he should decline significantly slower.
What treatments are you pursuing?
As of Fall 2024 there has been a lull in the experimental treatment trials so he has been pursuing compassionate access (EAP) to treatments that are still in early trials. Nevertheless, after months of advocating, he hasn’t been able to get access to anything. He is on the only 2 approved medicines, Riluzole and Radicava, but they are only expected to extend life by a few months. While he waits for treatments he will be taking ultra-high dose B12 (methylcobalamin) since it slowed progression in some patients.
Can I visit or meet you somewhere?
Rob would love to be with his community / chosen family! See precautions below. Frankly he is overwhelmed so it would be a big gift for you to plan the entire get-together. See below for some suggested activities. Please reach out to Arlyn (arlynjohns@gmail.com) since he is handling Rob's calendar.
Precautions
The leading cause of death for ALS patients is pneumonia so he is taking extreme precautions to preserve his breathing function. He wears an N95 mask indoors (hence no indoor dining) unless everyone has been same-day tested with PCR-grade Covid+Flu rapid tests. Acceptable PCR grade tests include Lucira COVID-19 & Flu Test or Metrix COVID-19 Test (note: requires reusable Reader).
How can I help?
I am very touched that you want to devote some of your time and skills towards my journey. There is a list of leads that is being assembled where people with experience and skills in these areas can proactively drive a project. If you have suitable time and skills for a lead position, or for a non-listed lead position that can utilize your gifts, please reach out. The leads will also need people to assist them if you have an interest in a certain area. One key principal is that I am overwhelmed and hence cannot proactively drive these various activities, nevertheless I am eager to be involved to discuss and guide. Reach out to Arlyn (arlynjohns@gmail.com) or Ron (renikel@ronnikel.com)
Do you need financial support?
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In general Laini and Rob's personal finances are fine. Nevertheless some of the tech solutions he feels will make a big impact to his quality of life take both money and effort. If you are tech-inclined there are several projects that could use some committed effort. Please reach out to Christoph (christoph@svahalabs.com) to express your interest.
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If would like to provide financial support, Rob would like to set up a non-profit org that will go towards funding these projects and making them available to himself and others with similar afflictions. We will announce more soon but please reach out to Arlyn (arlynjohns@gmail.com) to express your interest in either donating or helping to establish such an organization.
What kind of activities are good to do with Rob?
- intimate home gatherings like lunch or dinner
- video/board game/movie nights
- outdoor live music
- low difficulty nature walks
- sun filled, especially sunset, get togethers
- wellness retreats
- foodie pilgrimages (outdoor dining/takeout)
What should I keep in mind when spending time with Rob?
- Keep in mind, Rob's voice is weak and his voice gets tired easily. Better to ask him questions that have yes or no answers. Do not make plans to go out to loud places if you want to have a conversation. BTW, Rob is starting to learn sign language
- His mobility is degraded so he walks slower, therefore long strenuous hikes are not a good idea.
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