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Never Say Invisible: A Memoir of Living and Being Seen with ALS
“With honesty, poignancy, passion, and humor, this book will open your eyes and possibly your heart.”—Sue Monk Kidd, New York Times bestselling author
Jeremy Schreiber was on top of the world—athletic, newly married, successful. And then something went terribly wrong. In this moving memoir, he shares his journey after he received a terrifying diagnosis: ALS.
As the devastating disease robbed him of movement and speech, he was abandoned by his wife and betrayed by a society that shuns people with disabilities. But it’s not all doom and gloom. He found love, support, and a powerful purpose.
While fighting for his independence and then for his life, Jeremy gave his all to the ALS and disability communities. Never Say Invisible is his legacy gift. Smart, clever, and humorous, his story is a testament to what can be learned and achieved despite a terminal illness.
Jeremy died on October 29, 2021, before he could finish this book. Sandra Jonas Publishing is proud to collaborate with his parents, Fred and Ronnye Schreiber, to carry on his work.
“The honesty, anger, and unflinching detail of Schreiber’s account bestow a power most inspirational stories lack. I will not forget this book.”—Mary Roach, New York Times bestselling author
Jeremy Schreiber was on top of the world—athletic, newly married, successful. And then something went terribly wrong. In this moving memoir, he shares his journey after he received a terrifying diagnosis: ALS.
As the devastating disease robbed him of movement and speech, he was abandoned by his wife and betrayed by a society that shuns people with disabilities. But it’s not all doom and gloom. He found love, support, and a powerful purpose.
While fighting for his independence and then for his life, Jeremy gave his all to the ALS and disability communities. Never Say Invisible is his legacy gift. Smart, clever, and humorous, his story is a testament to what can be learned and achieved despite a terminal illness.
Jeremy died on October 29, 2021, before he could finish this book. Sandra Jonas Publishing is proud to collaborate with his parents, Fred and Ronnye Schreiber, to carry on his work.
“The honesty, anger, and unflinching detail of Schreiber’s account bestow a power most inspirational stories lack. I will not forget this book.”—Mary Roach, New York Times bestselling author
194 pages, Kindle Edition
First published October 18, 2022
123 people are currently reading
559 people want to read
About the author
Jeremy Schreiber
2 books7 followersJeremy Schreiber was an entrepreneur, writer, and ALS warrior. He first started to write and speak about his own experiences after being diagnosed with ALS in January 2018. Drawing from his personal story, Jeremy offered a unique perspective into a world where injustice is frequent and unapologetically out in the open. He was passionate about helping and motivating those with disabilities to improve their lives and overcome the challenges they face. He also gave a voice to the people society has rendered invisible, covering such topics as travel, new treatments, medical marijuana, and technology. After a long battle with ALS, Jeremy passed away on October 29, 2021. His parents, Fred and Ronnye Schreiber, are proud to carry on his legacy.
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Displaying 1 - 29 of 29 reviews
August 3, 2022
Before I begin this review, I want to be perfectly transparent. Jeremy was my sister's son. I am his uncle. The opinions I am about to express may be seen as slanted due to my familial relationship. In all honesty, you're probably right.
Jeremy did not write a book that only gave a moderately acerbic account of living every day with ALS. It was interspersed with a light touch of humor into the foibles of the human condition. In particular, the way we interact with the disabled.
Reaching into the realms of dark humor, Jeremy offers important insights as to the practical working of the ADA. This Federal Program, which is supposed to help all disabled, is failing miserably as Jeremy explains from his wheelchair vantage point. While he criticized the Federal Government for not fulfilling its role for the disabled, he didn't sit by and just complain. He was called upon to speak to the New Jersey Legislature to ask for the money needed for ALS. As a superior salesman, he crafted a presentation that helped bring 1 million dollars to New Jersey ALS.
Jeremy finished his life's story by presenting a blueprint to other disabled people everywhere. He explained simply what to do, how to react, and how to get what you need to help with your disability.
Never Say Invisible is a remarkable work that the powers that be should see as a document that deserves national recognition for its great service to humanity.
Jeremy did not write a book that only gave a moderately acerbic account of living every day with ALS. It was interspersed with a light touch of humor into the foibles of the human condition. In particular, the way we interact with the disabled.
Reaching into the realms of dark humor, Jeremy offers important insights as to the practical working of the ADA. This Federal Program, which is supposed to help all disabled, is failing miserably as Jeremy explains from his wheelchair vantage point. While he criticized the Federal Government for not fulfilling its role for the disabled, he didn't sit by and just complain. He was called upon to speak to the New Jersey Legislature to ask for the money needed for ALS. As a superior salesman, he crafted a presentation that helped bring 1 million dollars to New Jersey ALS.
Jeremy finished his life's story by presenting a blueprint to other disabled people everywhere. He explained simply what to do, how to react, and how to get what you need to help with your disability.
Never Say Invisible is a remarkable work that the powers that be should see as a document that deserves national recognition for its great service to humanity.
July 29, 2022
This book reflects the extraordinary life of a truly courageous man. With humor, common sense, compassion, and without feeling sorry for himself in the least, Jeremy Schreiber takes you on a journey through the hellish trauma of ALS, known to most of us as Lou Gehrig’s disease. This beautifully written book explains in startlingly clear detail what it is like to go from a powerful, successful, happy human being to a man in a wheelchair with almost no control over his body or anything else for that matter.
The author fights this disease with unfailing perseverance, humor, and dedication to others who do now or might suffer from this horrible affliction. Even if your life is perfect and your body is disease-free, Mr. Schreiber will let you know how well-intentioned people either ignore a handicapped person or give a fleeting smile, without thinking that a little act of kindness would make his entire day. Imagine a world where every movement becomes impossible over time and your body deteriorates while you are helpless to stop it.
Of all the books I have ever read on personal courage, this book and this man are the most courageous I have known. His extraordinary spirit, humor, and grace need to be experienced by everyone who thinks life is difficult. Bravo, Jeremy Schreiber! I am a devoted fan and follower who feels unworthy to claim courage given the amount you show every day of your life.
The author fights this disease with unfailing perseverance, humor, and dedication to others who do now or might suffer from this horrible affliction. Even if your life is perfect and your body is disease-free, Mr. Schreiber will let you know how well-intentioned people either ignore a handicapped person or give a fleeting smile, without thinking that a little act of kindness would make his entire day. Imagine a world where every movement becomes impossible over time and your body deteriorates while you are helpless to stop it.
Of all the books I have ever read on personal courage, this book and this man are the most courageous I have known. His extraordinary spirit, humor, and grace need to be experienced by everyone who thinks life is difficult. Bravo, Jeremy Schreiber! I am a devoted fan and follower who feels unworthy to claim courage given the amount you show every day of your life.
June 29, 2022
Having lost my father to ALS, I can confidently say this is the book that most represents what day-to-day life of living with ALS (as a caregiver) is like. Jeremy's story is touching, inspiring, heart-breaking, and more often than not hilarious.
Jeremy's humor shines through in his descriptions of people he meets on his ALS journey as well as asides during interactions on every level. This humor is well-placed as many of the issues he describes can be difficult to read on its own but said humor buffers the worst of it and makes for easy transitions.
This is an excellent choice to learn more about almost every aspect of the ALS experience, everything from the intense displeasure of traveling to finding a way to make working ... work, to the kinds of experience not every person with ALS will have such as advocating to the state legislature for $1 million in aid.
I can't recommend this book enough even though I do so with tears having finished it. I read the digital version on Kindle but will 100% buy the physical edition so I can put it on my shelf to live on in posterity.
Jeremy's humor shines through in his descriptions of people he meets on his ALS journey as well as asides during interactions on every level. This humor is well-placed as many of the issues he describes can be difficult to read on its own but said humor buffers the worst of it and makes for easy transitions.
This is an excellent choice to learn more about almost every aspect of the ALS experience, everything from the intense displeasure of traveling to finding a way to make working ... work, to the kinds of experience not every person with ALS will have such as advocating to the state legislature for $1 million in aid.
I can't recommend this book enough even though I do so with tears having finished it. I read the digital version on Kindle but will 100% buy the physical edition so I can put it on my shelf to live on in posterity.
July 12, 2022
“Never Say Invisible” is a deeply moving memoir of one man’s experience living with ALS. In this book Jeremy focuses on the pervasive discrimination, lack of disability accommodations, and marginalization of someone living with a debilitating and progressive disease. Jeremy’s writing is raw, painful, and harshly critical of the ADA.
At the same time, he demonstrates the infinite support of his parents and their extraordinary efforts to find a cure for his illness in health care system that is difficult to navigate.
Jeremy’s account is humorous when he details his parents’ technological challenges as they try to master the increasingly difficult issues of his care.
For anyone suffering from a progressive disorder like ALS, this book provides valuable insights into the experiences of one man and his family.
At the same time, he demonstrates the infinite support of his parents and their extraordinary efforts to find a cure for his illness in health care system that is difficult to navigate.
Jeremy’s account is humorous when he details his parents’ technological challenges as they try to master the increasingly difficult issues of his care.
For anyone suffering from a progressive disorder like ALS, this book provides valuable insights into the experiences of one man and his family.
July 29, 2022
This book reflects the extraordinary life of a truly courageous man. With humor, common sense, compassion, and without feeling sorry for himself in the least, Jeremy Schreiber takes you on a journey through the hellish trauma of ALS, known to most of us as Lou Gehrig’s disease. This beautifully written book explains in startlingly clear detail what it is like to go from a powerful, successful, happy human being to a man in a wheelchair with almost no control over his body or anything else for that matter.
The author fights this disease with unfailing perseverance, humor, and dedication to others who do now or might suffer from this horrible affliction. Even if your life is perfect and your body is disease-free, Mr. Schreiber will let you know how well-intentioned people either ignore a handicapped person or give a fleeting smile, without thinking that a little act of kindness would make his entire day. Imagine a world where every movement becomes impossible over time and your body deteriorates while you are helpless to stop it.
Of all the books I have ever read on personal courage, this book and this man are the most courageous I have known. His extraordinary spirit, humor, and grace need to be experienced by everyone who thinks life is difficult. Bravo, Jeremy Schreiber! I am a devoted fan and follower who feels unworthy to claim courage given the amount you show every day of your life.
The author fights this disease with unfailing perseverance, humor, and dedication to others who do now or might suffer from this horrible affliction. Even if your life is perfect and your body is disease-free, Mr. Schreiber will let you know how well-intentioned people either ignore a handicapped person or give a fleeting smile, without thinking that a little act of kindness would make his entire day. Imagine a world where every movement becomes impossible over time and your body deteriorates while you are helpless to stop it.
Of all the books I have ever read on personal courage, this book and this man are the most courageous I have known. His extraordinary spirit, humor, and grace need to be experienced by everyone who thinks life is difficult. Bravo, Jeremy Schreiber! I am a devoted fan and follower who feels unworthy to claim courage given the amount you show every day of your life.
July 16, 2022
Have you ever seen a person across a room, restaurant, street who is different? Who uses a wheelchair or assistive walking device Who looks like they might need assistance, but you walk right by? You don’t make eye contact because you don’t know this person. You have been taught to “not stare” so you assume the person is not there. They now have the unwanted super power of invisibility.
In Jeremy’s memoir the old instructions of “don’t stare” are thrown out the window. Jeremy invites the reader into his personal fight with ASL and all that went with it.
This book is so honest that it forces your eyes open where it was easier to look away. 20 years Working in health care has never made me see and feel as much as reading about Jeremy’s experience.
I invite anyone in health care, anyone who knows someone with ALS or any difficulty in life, physical or not, to read Never Say Invisible. Your empathy for those around you you be broadened.
In Jeremy’s memoir the old instructions of “don’t stare” are thrown out the window. Jeremy invites the reader into his personal fight with ASL and all that went with it.
This book is so honest that it forces your eyes open where it was easier to look away. 20 years Working in health care has never made me see and feel as much as reading about Jeremy’s experience.
I invite anyone in health care, anyone who knows someone with ALS or any difficulty in life, physical or not, to read Never Say Invisible. Your empathy for those around you you be broadened.
January 18, 2023
My husband first symptoms of ALS occurred during covid, but was diagnosed in 2021 when he was 61 years. He was on Riluzole- not crazy about it! he was also on Gabapentin and Radicava not crazy about any of it either, The Rilutek (riluzole) did very little to help him. The medical team did even less. His decline was rapid and devastating. His arms weakened first, then his hands and legs. I was a master Gardener and love herbs! This ALS took my life from me, I was no longer able to work in my garden anymore because I was a full time caregiver for my husband. We stopped most of his ALS medications due to severe side effects and I started him on herbal treatments from Health Herbs Clinic (health herbs clinic. c om), the treatment has made a very huge difference for him. His symptoms including body weakness and slurred speech disappeared after few months on the treatment. He is getting active again since starting this treatment, he is able to walk and able to ride his treadmill again.
August 8, 2022
Jeremy Schreiber’s book comprises two main parts: His journey going from a normal healthy 38-year old to a wheelchair-bound paralyzed victim of ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s Disease, a fatal disease), and also the discrimination and disadvantages he encountered while being handicapped. He wrote the book in the here and now, so parts of it read like a diary. Other parts will open your eyes to the struggles of the handicapped. This book is an eye-opener for those not acquainted with ALS, other than what little they’ve read about Lou Gehrig. Don’t be afraid to read it; there are, of course, sad parts, but there are also funny parts and snarky parts. He was a fighter: he worked with other ALS victims to have legislation regarding ALS passed; he got a patent on a weed device that can be used by the handicapped; he researched everything about ALS on the Web, he got into a clinical trial for an ALS treatment, and he wrote most of this book. My wife and I worked with his publisher to complete the book because he passed away on October 21, 2022 before he could finish it.
January 11, 2023
This book would be a good resource for people with ALS, but for the average reader it’s not a book I would recommend. My mother died of an upper motor neuron disease that was thought to be ALS, however the tests were inconclusive. Her disease progressed like ALS, so I read this book in the hope of understanding the disease a bit more. There’s a lot of good resources in this book, but it jumps around so much that it’s hard to follow. Jeremy cannot talk and his muscles are spasming. He’s in a wheel chair, but several paragraphs later he’s walking with crutches into a doctors office to see if he can get a diagnosis. This book jumps back and forth and in between so badly that it makes keeping up with his progression almost impossible. Jeremy died before he could finish the book, so his Dad and others finished it for him. Overall a good book if you want to know more about how to set up go fund me accounts or about the ADA and charities and such, but if you’re looking for an interesting story of someone’s life with ALS, this book is not the one.
October 26, 2024
just what I needed
I was diagnosed 4 weeks ago today. More questions than you can imagine since I can’t get into an ALS clinic until January. This book has given me a glimpse of what’s to come from someone who’s lived it. Thank you!
I was diagnosed 4 weeks ago today. More questions than you can imagine since I can’t get into an ALS clinic until January. This book has given me a glimpse of what’s to come from someone who’s lived it. Thank you!
August 18, 2022
Begin review
When I was asked to review this book, I had no idea the emotions I would experience. I at first thought that as an aspiring author myself I would look at the narrative with a critical eye of a fellow writer. Very quickly, I realized that I was entering the world of someone who was dealing with the very same emotional upheavals that one of our closest friends and his family are dealing with as he lives out his young life as a quadriplegic. I could not stop thinking of our dear loved one as I read the words of another young man trapped in a body that was betraying him. But, like our dear young friend, Jeremy Schreiber used his most powerful human component, his mind, to fight back.
It was this mind that created the words transporting me into a wheelchair with Jeremy - trying to navigate hallways, crowded rooms, elevators, - and life. He exposed me to the subtle body language that we "healthy" people use when dealing with someone in a wheelchair - including exiting their world by simply standing up! There was great insight I gained from each page and word he painstakingly shared with me.
Jeremy Schreiber left me a gift that I had no idea I needed, but I did. You could find it so as well.
End of Review
When I was asked to review this book, I had no idea the emotions I would experience. I at first thought that as an aspiring author myself I would look at the narrative with a critical eye of a fellow writer. Very quickly, I realized that I was entering the world of someone who was dealing with the very same emotional upheavals that one of our closest friends and his family are dealing with as he lives out his young life as a quadriplegic. I could not stop thinking of our dear loved one as I read the words of another young man trapped in a body that was betraying him. But, like our dear young friend, Jeremy Schreiber used his most powerful human component, his mind, to fight back.
It was this mind that created the words transporting me into a wheelchair with Jeremy - trying to navigate hallways, crowded rooms, elevators, - and life. He exposed me to the subtle body language that we "healthy" people use when dealing with someone in a wheelchair - including exiting their world by simply standing up! There was great insight I gained from each page and word he painstakingly shared with me.
Jeremy Schreiber left me a gift that I had no idea I needed, but I did. You could find it so as well.
End of Review
February 17, 2023
hard-hitting, funny and direct
Jeremy wrote this book after his diagnosis of ALS. You don’t have to be an ALS patient or a family member to learn from this book.
Jeremy holds nothing back. He has a delightful, biting wit, while at the same time not sugarcoating anything.
I’m disabled and now in a wheelchair much of the time. So his explanations about ADA, accessibility, the law, the challenges we face going out.
I laughed at things that I’ve experienced myself. And nodded in agreement with the things that need to change for all disabilities.
This book is going to become a classic for people with disabilities.
Jeremy wrote this book after his diagnosis of ALS. You don’t have to be an ALS patient or a family member to learn from this book.
Jeremy holds nothing back. He has a delightful, biting wit, while at the same time not sugarcoating anything.
I’m disabled and now in a wheelchair much of the time. So his explanations about ADA, accessibility, the law, the challenges we face going out.
I laughed at things that I’ve experienced myself. And nodded in agreement with the things that need to change for all disabilities.
This book is going to become a classic for people with disabilities.
May 3, 2023
I read Jeremy's book yesterday, I couldn't put it down. I laughed aloud and cried (sobbed) a few times.
It is funny, true and honestly, it hit home for me, as I suffer from a rare disease as well. I related to a lot of his stories.
I loved his book!
I think I talked about it all day to whoever would listen to me!
Everyone should read it; those that are going through a disease with no cure, those in a wheelchair, those that feel invisible, as well as, parents, caregivers, spouses, everyone.
I would like to share how important his message is. If you're going to read or listen to one book, it should be this one!
It was truly uplifting, while I'm here I want to make a difference!
It is funny, true and honestly, it hit home for me, as I suffer from a rare disease as well. I related to a lot of his stories.
I loved his book!
I think I talked about it all day to whoever would listen to me!
Everyone should read it; those that are going through a disease with no cure, those in a wheelchair, those that feel invisible, as well as, parents, caregivers, spouses, everyone.
I would like to share how important his message is. If you're going to read or listen to one book, it should be this one!
It was truly uplifting, while I'm here I want to make a difference!
May 30, 2023
My husband who had been diagnosed with Bulbar ALS disease for 2 years at the age of 63 had all his symptoms reversed with Ayurveda medicine from natural herbs centre. com after undergoing their ALS/MND natural protocol, he no longer requires a feeding tube. God Bless all Lou Gehrig’s disease Caregivers. Stay Strong, take small moments throughout the day to thank yourself, to love your self, and pray to whatever faith, star, spiritual force you believe in and ask for strength. I can personally vouch for these remedy but you would probably need to decide what works best for you.
July 4, 2024
I listened to the audiobook. It was not easy to rate the book or get through it. A few parts were quite educational however I felt as though there were many many chapters of filled with too much anger and annoyance to properly tell the story. There were also jokes that were attempted but didn’t work for me. I also was amazed that the patient never spoke of a neurologist that followed him and helped with navigating the feeding tube, testing and his care of ALS. I think this story would have a bigger impact if it was told differently. Less complaining and more information.
May 3, 2023
a must read
Jeremy describes his life with ALS in a manner that does not make you feel only sadness for what he is going through, but also inspires you to make changes that can help others is your life with disabilities feel seen and appreciated. He does this often with the use of humor. I am so happy to have read his book and learned about the life he LIVED, even as he was dying from ALS.
Jeremy describes his life with ALS in a manner that does not make you feel only sadness for what he is going through, but also inspires you to make changes that can help others is your life with disabilities feel seen and appreciated. He does this often with the use of humor. I am so happy to have read his book and learned about the life he LIVED, even as he was dying from ALS.
February 3, 2023
More than a story of an illness
Jeremy writes about living and dying with ALS. But he does more than that. He shares how to change laws, complain to corporations in a way that gets results, and now not to be invisible.
And Melissa is my hero. When you read the book you'll know why.
Jeremy writes about living and dying with ALS. But he does more than that. He shares how to change laws, complain to corporations in a way that gets results, and now not to be invisible.
And Melissa is my hero. When you read the book you'll know why.
June 2, 2024
An important book written by a brave, intelligent, and courageous person. You should read this if you want to better advocate for your health or someone else's, if you want to be inspired, if you need to feel seen, or if you have the power or influence to help make change for those with chronic illness or disabilities.
March 16, 2023
A Must Read
Liked his approach. Wrote directly to the point using sarcastic humor to punctuate said point where appropriate. Also recognized the immense support of family and friends. Not an easy role for those folks.
Liked his approach. Wrote directly to the point using sarcastic humor to punctuate said point where appropriate. Also recognized the immense support of family and friends. Not an easy role for those folks.
May 19, 2023
Important story, should be required reading for health care professionals
Very well written book! I lost my only aunt to ALS 45 years ago and what she went through was heartbreaking. Great advice for able bodied people on how not to treat the disabled.
Very well written book! I lost my only aunt to ALS 45 years ago and what she went through was heartbreaking. Great advice for able bodied people on how not to treat the disabled.
November 27, 2022
Compelling !
When I first started reading this book -almost quit as I thought it was a "pity party" . Far from it Interesting and informative. Sad ending to a young life.
When I first started reading this book -almost quit as I thought it was a "pity party" . Far from it Interesting and informative. Sad ending to a young life.
March 5, 2023
author share his many experiences of the disease als, difficulty to eat, sleep, parents assistance, relationships, medical hoops, travel, and more. insightful. swearing.
March 25, 2023
Amazing
March 29, 2023
Good book
July 3, 2023
I learned so much from this book. I could not stop reading it. The writing was great, the story impactful.
Marion
Marion
November 23, 2023
This a harrowing yet inspirational first person story of what it’s like to live with ALS. It helps you to see disability in a new light, which I think is what the author was truly after.
August 3, 2022
Before I begin this review, I want to be perfectly transparent. Jeremy was my sister's son. I am his uncle. The opinions I am about to express may be seen as slanted due to my familial relationship. In all honesty, you're probably right.
Jeremy did not write a book that only gave a moderately acerbic account of living every day with ALS. It was interspersed with a light touch of humor into the foibles of the human condition. In particular, the way we interact with the disabled.
Reaching into the realms of dark humor, Jeremy offers important insights as to the practical working of the ADA. This Federal Program, which is supposed to help all disabled, is failing miserably as Jeremy explains from his wheelchair vantage point. While he criticized the Federal Government for not fulfilling its role for the disabled, he didn't sit by and just complain. He was called upon to speak to the New Jersey Legislature to ask for the money needed for ALS. As a superior salesman, he crafted a presentation that helped bring 1 million dollars to New Jersey ALS.
Jeremy finished his life's story by presenting a blueprint to other disabled people everywhere. He explained simply what to do, how to react, and how to get what you need to help with your disability.
Never Say Invisible is a remarkable work that the powers that be should see as a document that deserves national recognition for its great service to humanity.
Jeremy did not write a book that only gave a moderately acerbic account of living every day with ALS. It was interspersed with a light touch of humor into the foibles of the human condition. In particular, the way we interact with the disabled.
Reaching into the realms of dark humor, Jeremy offers important insights as to the practical working of the ADA. This Federal Program, which is supposed to help all disabled, is failing miserably as Jeremy explains from his wheelchair vantage point. While he criticized the Federal Government for not fulfilling its role for the disabled, he didn't sit by and just complain. He was called upon to speak to the New Jersey Legislature to ask for the money needed for ALS. As a superior salesman, he crafted a presentation that helped bring 1 million dollars to New Jersey ALS.
Jeremy finished his life's story by presenting a blueprint to other disabled people everywhere. He explained simply what to do, how to react, and how to get what you need to help with your disability.
Never Say Invisible is a remarkable work that the powers that be should see as a document that deserves national recognition for its great service to humanity.
August 13, 2024
Written by a man with ALS, it provides his firsthand experiences with the affliction and how to really help those who have it. But his attitude was so caustic in places — criticizing those who try to help but don’t know how — that it made me feel less sympathy for him, which is sad for such a devastating diagnosis.
July 29, 2022
Jeremy is diagnosed with ALS in his 40's. He quickly sees the limitations of the disease and how the Disability Act helps but is full of flaws. His marriage falls apart and he tries to improve the conditions for ALSers in his remaining years. A book full of strength and courage by all.
Displaying 1 - 29 of 29 reviews