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Jeremy's Legacy - Never Say Invisible: A Memoir

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We started this campaign for Jeremy Schreiber, as a way for his friends, family, and others to show solidarity with Jeremy and help offset the mounting costs of living with ALS.  Your donations helped him live comfortably with this disease, and pursue many projects as an advocate for others suffering with ALS. One of those projects was his book, Never Say Invisible, which he had hoped to see published soon. Unfortunately, Jeremy lost his battle to ALS on October 29, 2021, one day shy of his 42nd birthday. While Jeremy didn't get to publish his book, his parents, Fred and Ronnye, have been working with Sandra Jonas Publishing to make sure Jeremy's legacy is fulfilled. 

We are so pleased to announce the book, Never Say Invisible: A Memoir of Living and Being Seen with ALS, will be released on Amazon on June 21, 2022! The Kindle and paperback editions will be available, with a hard cover and audiobook version coming soon. The Kindle preorder will be $.99 cents for the first 2 weeks of the release, and $5.99 thereafter. More than anything, we would love you to buy a book and review it on Amazon!

Jeremy was loved by so many people, and we know his words will go on to affect many more who never knew him. We have been so humbled and appreciative of your support, and hope you are excited as we are to read his book.

For clarity, please note that any further donations to the campaign will be managed by Jeremy's parents Fred and Ronnye, and go toward publishing costs of Never Say Invisible: A Memoir of Living and Being Seen with ALS. Those costs include editing, cover design, book formatting and ongoing marketing efforts that will help spread Jeremy's message. Thank you all for your moral, emotional and financial support throughout the years.

To read more from Jeremy's blog, get information about his book, and sign up for the newsletter, please visit his website Never Say Invisible.

Please take the time to read Jeremy’s story included below:


“My name is Jeremy Schreiber. I was living a great and happy life in New York City with my wife of two years, had a soaring career in software sales, and a deep passion for running and sailing; Until everything changed.

In March 2017, I noticed my right foot wasn’t keeping up with my left and was causing me to trip. I didn’t think much of it until my primary care doctor told me this was a much more serious issue and referred me to the first of what would be many neurologists. 

I was tested for everything from AIDS to Zika. MRI’s, CT scans, EMG’s, blood tests and painful spinal taps - The results were inconclusive, and the bills were piling up rapidly. The fear of the unknown was causing all sorts of stress – Weight loss, sleeplessness, lack of focus, and the depression was starting to get worse.

Still not receiving answers, I enrolled in the second opinion program at the Mayo Clinic. Guided by Dr. Andrew McKeon, my parents and I spent a week in frigid Rochester, MN repeating all the painful tests hoping for answers. As every test result came in, we tried everything we could to interpret each result. We laughed and cried with happiness when we thought it was something simple and panicked and cried together when the simple things were ruled out. We were physically exhausted from the emotional ups and downs.

On the last day at Mayo, January 5th, 2018, I was diagnosed with ALS (Lou Gehrig’s Disease, amyotrophic lateral sclerosis).

Now 38 years old, my world has been turned upside down.

My body was quickly failing me. My balance and walking were affected making me fall many times; my hands could barely hold a fork or type an email; And getting dressed was nearly impossible. The fear and anxiety of daily living were increasingly more paralyzing.

Moving to my parents house in order to receive the extraordinary care I would need to live out the hardest time in my life meant leaving everything about my life in New York City behind.  I was crushed.

ALS, also known as Motor Neuron Disease or Lou Gehrig's Disease, has no cure, yet.

The average lifespan from diagnosis is two to five years. I’m not sure what my journey will bring because every individual’s experience with ALS is different, meaning there are a lot of unknowns for my family and me. What I do know is that I’m focused on doing everything I can to fight this disease and delay its progression into the more debilitating stages.

As many of my family, friends and coworkers know, I have a strong positive mental attitude and a passion for life. So as difficult and sad as this diagnosis is, I remain positive, and I gather my strength from the outpouring of love and well-wishes from my family and friends, my employer,, and the men’s group, MDI ( ).

Fundraising team: Fundraiser Team (3)

Laura Hickey
Livingston, NJ
Fred Schreiber
Ronnye Schreiber
Team member

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