I reached out to ALS Worldwide when I was first diagnosed with ALS almost four and a half years ago. Admittedly I was looking for anyone that could help me and I had no idea what, if anything, I could expect from ALS Worldwide. Not only did I get a response to my questions, but Stephen Byer set up a personal Skype session with me where we discussed my health and possible treatment options available to me. Since that day Steve, his wife Barbara, and the staff at ALS Worldwide have provided invaluable support and countless hours of personalized advice and have never asked for compensation of any kind. While I know they provide support to hundreds if not thousands of PALS, they always make me feel like I am special. Their positive and hopeful attitude is a welcome change to what PALS typically experienced. Four plus years into this disease and I am still leading a fairly independent life full of hope and optimism about the future. I cannot imagine where I would be if not for the good people at ALS Worldwide and I am truly grateful for all the help they have provided and continue to provide to me.
Review from Guidestar
Hi, my name is Keith Johnson from Pineville, Louisiana, and I was diagnosed with ALS a little over two years ago in November of 2012. When I first got this news I was devastated. The doctor told me I had two to five years to live, during which time I would become completely paralyzed, not being able to speak, eat, or eventually to even breath. I was immediately concerned for my family, wondering what kind of burden I would become to them
I’m now more optimistic than I’ve ever been about the future. Part of the reason for my optimism is my association with ALS Worldwide. Early on in my battle with ALS, I was searching the internet for treatment options and I ran across their website which had information that I was curious about. I sent an email to Stephen Byer, not really thinking I would ever get a response. Not only did I get a response, but he set up a Skype video call with me and talked to me about my health, when I was diagnosed, what I was doing treatment wise, and just provided someone to talk to that completely understood what I was going through.
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My only child, Aaron, was diagnosed with ALS in November 2011, at the age of only 20 years old. A single mother, I felt alone, scared, and angry, and I was desperate to find help. In February 2012, I took Aaron from Kentucky to see ALS neurologist, Dr. Nicholas Maragakis at Johns Hopkins Hospital in Baltimore, Maryland, in which he referred us to ALS Worldwide. From my initial phone call to ALS Worldwide, and every day since, ALS Worldwide has been faithful in helping my precious Aaron battle ALS. They have provided to us, without charge, trial medications, therapies, and imperative resources that we would never have had access to, or knowledge of, without ALS Worldwide's support, passion, and relentless drive to find a cure for ALS. The founders, Steve and Barb Byer, have truly been a blessing to us, and we absolutely cannot imagine what we would do without their organization.
-Tammy Mattox, Kentucky
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ALS Worldwide gives me hope when no hope is to be found elsewhere. Really, they mean everything to me and my family. They have given me tremendouse support from the first day I was so lucky to stumble upon them. I get medication that others cant supply, and they give knowledge and moral support in a time of hardship. I am eternally greatful for what they have done for me, and I recommend all others with ALS to get in touch with them.
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I starting experiencing symptoms such as foot drop and difficulty in walking in August 2013 . After numerous visits to various neurologists I was diagnosed with ALS February 2014. The diagnosis came as a shock to our whole family and it was even more devastating when we realised there was very little information or help available for us in South Africa. We were determined not to just accept . After extensive research we were very lucky to find and make contact with Stephen at ALS Worldwide. We were overwhelmed with their empathy and support and their positive approach to helping us fight this disease and maintain hope. Stephen is always available to provide advice and support during many skype sessions and has not only recommended but also sourced many medications for me that have provided symptomatic relief and enabled me to have a far better quality of life. We are very grateful for the love, caring and knowledgeable support that we have received from Stephen, Barbara and Sarah which continues to give us hope. Susan Touzel, Durban, South Africa
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The most caring organization I have ever seen! Tremendous advocacy for clients and superior individual attention. ALSWW is characterized by knowledgeable, selfless and dedicated people. I give them the highest accolades.
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My mother was diagnosed with ALS two years ago.
Since then, and as she has deteriorated, we've struggled through the prescribed stages of grief. We've held out for miracles and desperately but unsuccessfully tried any number of therapies. We've given up hope on more days than I can remember.
But we've been dragged back, every single time, by the incredible humanity and tireless optimism of Stephen and Barbara Byer, who continue to remind us that we have chosen to fight this disease and its grim prognosis, and that despite the seemingly insurmountable odds, we will never have to fight it alone.
The extremely patient support which they have extended us beggars belief. The fact that they have been able to commit themselves personally and with equal dedication to each family that has reached out to them is nothing short of a miracle.
Ceaseless as they have been in their quest for every bit of knowledge that might be applied to bring my mother some relief, and so very dignified in the way they have helped us deal with our emotions, they are the very rock upon which we are tethered against the tumult of ALS.
As long as they continue to hold a candle to this darkness, I have no doubt that we will one day defeat this horrific disease which has cost us, and them, so very much.
My name is Amy, and my husband Todd and I have three children- Caitlyn, Christian, and Caleb. Todd was diagnosed with ALS on August 9, 2013, and we have been fighting as a family since 2008 when the symptoms first began.
How this has impacted our lives has knocked us to our knees. At the beginning we were so overwhelmed, we didn’t know what to do or what to think. Then we put our positive thoughts, our hope, and our belief that one day, and one day very soon, there would be a cure and a miracle placed not only on our family but upon the thousands of families that fight ALS every single day.
My daughter Caitlyn is 9, and I wanted her to say to say a few words on how ALS has impacted not only her, but her two brothers:
“Well my dad used to tell us stories and talk to us, but ALS has taken away his voice, which will come back I know. And no matter what ALS does to my dad, he will still be the same funny guy we know. We just have to stay strong and believe that miracles and a cure will come.”
ALS Worldwide was the organization that reached out to us at the beginning when we were in a whirlwind. We had no idea what to do, what ALS was. The only thing we were hearing from neurologists was, “I’m so sorry, this is a terminal illness and there is no cure.” Steve Byer reached out to us, and got on weekly Skype calls to answer all of our questions, and gave us so much hope and information on so many things that we could do to try and keep Todd as strong as we can. We’ve followed his advice, and we will continue to do that.
I live in Durban, South Africa with my husband Charles and our four children. I was diagnosed with ALS/MND in February 2014, after undergoing numerous tests that eventually lead to this diagnosis. Understandably it was a great shock for the entire family and has impacted our daily lives quite considerably.
I am fortunate enough that my symptoms have started in my legs, and at the moment I’m feeling weakness in my back which is affecting my day-to-day mobility and the ability for me to do normal day-to-day tasks. I am very lucky that I have an extremely supportive family who have gone through this journey with me and supported me with love and caring.
We have found it extremely difficult in South Africa to find medical help as not much is known about the condition in South Africa. Very luckily for us, just going through the internet, we managed to find ALS Worldwide, who have been incredible in their support, their empathy, their caring, and their information in terms of possible medications that could help us. More than anything, we feel extremely grateful for the fact that they have given us hope.
At this stage we are feeling very positive with the route we are taking in terms of treatments. So far we are doing pretty well. We do appeal to you to support ALS Worldwide as there is no other organization who offers this kind of support to families in our situation who are desperately looking for some kind of light at the end of the tunnel, and to stay as positive as possible and that is the incredible support we have got from Stephen, Barbara, and Sarah. They have been unbelievable and unstinting in their support. We Skype with them once a month and have found them unbelievable in their help and their caring for us.
Hi, my name is Ryan Walker. I live in Kwazulu-Natal, South Africa with my wife and 2 daughters. I have been living with Motor Neuron Disease for two and a half years. ALS affects my family and me on a daily basis, from the moment we wake up until the moment we fall sleep. I lived a very active lifestyle. I’ve always tried to be healthy and fit and it’s getting progressively harder and harder to do that. At the moment my speaking, eating and breathing are fine, but my limbs are continually a challenge and is something that I find relentless and getting progressively worse.
ALS affects me in a thousand ways every day. I’m struggling to write, cutting up food is a challenge. Picking up my children, holding them, walking down the stairs. These are all a massive challenge and are getting harder each day. Getting dressed in the morning takes me half an hour instead of five minutes. Getting around my lands on the farm is a massive struggle. Tripping over the smallest step is something that is beginning to happen more and more often. Negotiating with my kids and chasing them when they’re trying to run away. It’s not all bad, but it’s not all good.
ALS Worldwide have been an incredible support structure for us. We were introduced to them through a mutual friend who is on the same journey. They’ve provided hope, they’ve provided guidance, and they’ve been a pillar of strength that we have time and again been able to rely on. Steve, Sarah, and Barbara Byer have been incredible. They’ve given us guidance on medication that they believe can assist ALS. They’ve given us guidance with stem cell therapies and the promise that they hold. We often call on them for guidance and they are always there for us, even on Sundays through Skype sessions. We’ve become very reliant on them.
My name is Tony Papoulias. I am a 62 year-old pensioner of Greek origin. Our Calvary started as early as the beginning of 2000 when my wife Annie observed with a feeling of awe the first bulbar symptoms settling on a day-to-day basis. Being a fast progressor, she was soon diagnosed with ALS at the age of 42 in Birmingham, UK. Our two daughters, Anastasia and Demi, aged 18 and 16, had to face the inexorable reality of their mothers imminent death. As a result, both of them great up and matured really fast.
It seems that it was God’s divine plan of my getting in touch with the Byer family in the summer of 2003. Needless to say, this very fact marked the beginning of a true friendship. And according to a well-known motto, “A friend in need is a friend indeed.” Never will I forget how much we profited from the precious pieces of advice offered or the unique way we were respected and treated. That is the reason why I do consider myself to be an extremely lucky man to have made their acquaintance.
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Hi, my name is Snatak Eymundur Kjeld, and I live in Iceland where I own a music store. I was diagnosed with ALS/MND in 2004. Right now my speech has deteriorated and I am not able to use my hands so much, but thankfully I still have full use of my legs. I really value the support my friends at ALS Worldwide have given me. The first time I spoke with Steve and Sarah from ALS Worldwide, I received more information in a two-hour conversation than in years of researching by myself.
Review from Guidestar
My wife Toni and I received my ALS diagnosis in October of 2011. Along with that news, our neurologist (at the time) was less than encouraging with statements like “If you want to travel anywhere, you’d better do it now.” We spent the next few months in a tailspin as we quickly learned that resources for people in our situation were, at best, very limited.
Finally, after countless hours of scouring the barren desert of ALS information, Toni found the oasis…Steve & Barbara Byer / ALSWW.
It was a joyous day on March 29, 2012 when Toni “encouraged” me to participate in that first Skype call with Mr. Byer. Since that time there have been numerous calls and emails where we’ve received information, advice and encouragement. Although my ALS has progressed, we are confident that the advice and involvement in various drug trials have given us many more quality days than we would have otherwise had. With that being said, the greatest gift we’ve received from Steve & Barbara is HOPE.
Many, many thanks to ALSWW for being our trusted advisor on this journey.
I was diagnosed with ALS in 2004. I immediately went online to research possible treatments, to no avail of course. I joined forums, where I heard about a drug with possibilities. Iplex is a growth hormone approved by the FDA for small-stature children. One would think it would be a no-brainer for the FDA to grant ALS patients’ access to Iplex, right? Well, of course the FDA has no brains, and so began our friendship with Barb and Steve.
Their son, Ben, who also was afflicted with ALS, was also on a quest to obtain the use of Iplex. Steve began the search for us. I had contacted the Italian Ministry of Health, as Iplex was being supplied by Insmed the American manufacturer to about 80 Italian ALS patients. We formed a multinational group called Team Iplex and staged a demonstration in front of the Capitol in DC. Steve and Barb were instrumental in guiding those of us who attended. Unfortunately, Ben had passed away a few months before.
Barb and Steve have devoted their lives in honor of Ben for the rest of us who struggle with ALS. They travel tirelessly around the world, uncovering scams and shysters, as well as exploring possible viable treatments for ALS patients. They have valuable notable medical connections. They also spend time visiting the families and patients at their homes, or in our case, where we happen to be living at the time. The Byer’s are a fount of knowledge and whenever I come across a “new” treatment, I always fire off an email to them asking if it is valid. Even our sons, 25 and 23, and my mom ask if we’ve contacted Steve if they read or hear of something. Barb and Steve aren’t just ALS friends; they are a big part of our family.
Debbie and Bill Gattoni
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In the couple of years only I have known Steve and Barbara Byer, I have seen them tirelessly circumvent the globe again and again to carry the flame of hope of ALS Worldwide to so many patients and their families in the far corners of the globe. In ALS, as in most neurodegenerative conditions, care-takers physicians, neurologists from around the world are often at a loss to alleviate the patient’s struggles with the illness or symptoms. In fact, with limited pharmaceutical resources to draw from, they often fail to establish the appropriate ‘medical protocol’ which has become synonymous with the successful treatments of cancer or cardiac diseases today. With so much of the published medical research in neurology based on anecdotal evidence, often conflicting, the asymmetry of information between patients and physicians or indeed between physicians themselves has never been greater.
ALS Worldwide was able to bridge this information gap for my family - and helped us after many unsuccessful attempts to curb one of the most debilitating symptoms of our patient (pseudobulbar palsy), by pointing us to a targeted drug at the time still under FSA review in America. This drug treated the symptoms fully, much to the wonder of the patient’s physicians and neurologists...
Yet, accompanying ALS patients and their families through the mazes of diagnosis and treatment protocols is only half of ALS Worldwide’s wide ranging mission. Each of their patient visits across America or abroad affords an excuse to inspect and survey the leading neurology research centres and hospitals from such places, identifying along the way some of the most interesting/upcoming research. I believe ALS Worldwide, along with other Non-Profit Organisations advocating for a faster delivery of treatments to patients, plays an important catalytic role for tomorrow’s cures to be developed today.
For these reasons, as well as Steve and Barbara Byer’s tireless and selfless personal commitment to fight a disease they couldn’t defeat in their own family, I chose to support ALS Worldwide.
Review from Guidestar
I have never met anyone like Stephen and Barbara Byer and ALS WORLDWİDE whole my life. When I first talked with them . I really felt the sincerety like even more than any of my relatives. They were the only one who really understood our situation. Our feelings about not being able to do anyhing about our most loved one,my mum, was killing us day by day but they gave such great help and support that we could continue our life.they made us obtain symptom relieveing meds that were really helpful. You feel that you are not alone and there is hope and there is something to do.This is very important because if you lose your hope , you löse everthing as this is the worst diagnosis that the human being can take I think.
I also met them in İstanbul,they were really helpful and kind. We spent several hours together but I haven't seen any sign of that they got bored of our several questions that we hadn't got reply from anyone until then .They were so friendly and sincere. We really had great time together. They also spoke with my mum on Skype and fortunately directed us to the doctor Merit Cudkowich from MGH. They helped us with the all contacts and procedures step by step.By means of them,we got the courage to see doctor abroad. And I think this is the most true decision we have taken so far.
We had some problem at the biiling department at MGH. We were really got shocked and stressed. They were the first people I called without hesitation and again only people who really relieved us. I don't know what I could do without their assistance.By their support ,we could turn back to our country in safe.Thanks to God ,we met them in this really desperate situation . We are very lucky and we will be debtful and grateful to them throughout our life.And they have never charged anything from us for their service so far.
Review from Guidestar
My thanks for the work done by Steve and Barbara and all who make up ALSWW is enormous to say the least. Their selfless dedication to investigate every avenue of potential treatment and assistance while striving to protect a desperate and highly vulnerable group is to be commended.
Their ability to successfully petition for an open label trial of Dexpramipexole has allowed me to slow the progress of this terrible disease and afforded me a commodity upon which no price can be placed – time with my family. At ages 4 and 9 my children have the myriad experiences of growing up still ahead of them and there is nothing I wish more than to stand by my wife and watch our children grow, to laugh and play with them, to pick them up when they fall down, and to give them the unconditional love that only a parent can know. These are things I had been told I would never know.
The efforts of ALSWW have given me more than just invaluable time with my family, they have also given me a glimmer of hope. The medications they provide help me to maintain a functional existence while my family and I wait for the breakthrough that will bring an end to this cruel and relentless disease. I have no doubt that an answer is near at hand, but without the efforts of organizations such as ALSWW this answer is at risk of remaining just beyond our reach.
I am deeply grateful for not only the medical support I have been given but also for the understanding and compassion shown by Steve and Barbara. They have been a rare source of warmth in what is often a cold world of life with ALS. I would ask any who can to support them in their endeavour to overcome this terrible disease and play a part in bringing hope and joy to thousands who have been given only despair.
Our sincerest thanks
The Edwards family
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In the early stages of my disease, we searched everywhere for a cure; the internet, medical and non-medical sources . Friends and family were also searching and offering contacts. We looked at a variety of "cures", we traveled within the USA and were about to travel to India when we heard about ALS Worldwide, Stephen and Barbara’s mission, their son Ben , and their willingness to share the knowledge they were compiling. They never claimed to be an expert but rather would travel to meet and speak to the scientists in the field as well as expose the frauds. We would never be able to find this information on our own.
Over these past four years, ALS WW has countered our despair with hope and our questions with options, all the while building a friendship of humor and mutual fondness for each other. We can't thank ALSWW enough and don't know where we would be without ALSWW.
Dear Friends of ALS WORLD WIDE:
I would like to provide you with a testimonial to both the incredible Organization of ALS Worldwide, and most importantly the dear souls , the Byers, who have dedicated their entire lives of "Devotion" to the cause of Helping all ALS afflicted patients and their families with so much love and caring and help. Let me explain :
First, some context please: My Wife of 47 years, Elaine , 65 years old at teh time, and in great health, had slurring issues develop and worsen in 6 months. Some misdiagnosis occurred , our panic when it was tested with the abhorrent EMG test and found to be ALS, followed by our personal denials and the familiar Lyme disease diversion routines, then massive searches for the #1 ALS clinics, Doctors who were at the top of all ongoing clinical trials, and not to dismiss the terrible sadness and dejection on our part when we researched the progression rate and the absolute guarantee of death (100% ) of varying degree's ,but terminal certainty and short longevity. We commenced into the short 2 year journey with God, Dr Merit of Mass General Clinic, and our new Dear Loved Friends, Barbara and Stephen Byer, of ALS WORLDWIDE.
During our research , we found that there was a myriad of sites professing to help with what 'cures, clinical trials, mouse and genetic research, patient variability, and on and on. Baffling beyond imagination. At the ALS Clinic at Mass Gen, we were told we would not be eligible for any current Clinical trials..they were all closed already. That the promising Biogen medication in the phased trial had promise, but all dosages were taken. DEAD END FOR US. We were suggested to look up ALS Worldwide who had some very limited access to the Biogen drugs approved by the Feds for special needs. We then contacted Barbara and Stephen Byers at ALS Worldwide for help.
The Extent of help by this INCREDIBLE couple and organization cannot be understated. They provided the most important of all medicines possible in this world...namely LOVE, CARING, SUPPORT, MEETING US PERSONALLY, THEIR WORLD WIDE DEDICATED TRAVELS TIRELESSLY FOR EVIDENCE OF PROGRESS MEDICALLY, AND RESEARCH OF EVERY KNOWN TRIAL FOR ALS, STATUS OF THOSE EFFORTS AND SO MUCH MORE. They shared with us the loss of their son to ALS, and gave us a copy of a personal movie of his life that he made and the insurmountable courage and achievement he achieved...it was breathlessly exhilarating. One could hardly feel down when you meet with these Owners and their absolute saint like devotion to every single human being who has this evil disease. They felt everyone's pain personally.
Having said that, they managed to find us a prescription to the experimental medicine from within their organization allotment . We were blessed, it gave us some hope for survival, albeit small because of the nature of the disease...but hope it was. Further, their research into all world wide medical trails and developments is one of a kind. In essence, one site, all information one needed to comprehend what is and not possible and what is the medical hope of the near future for patients. What more could one ask.
My wife died from complications of ALS. I know she loved the Byers deeply, and Dr Merit too of MGH who works with Steve and Barbara as well. I would ask every single person who has any means to support this organization , your generosity is so very needed to help them continue their pursuits and provide the leading patient support and critical information base in the world. ALS is EVIL beyond any single Neurological disease. Brings a healthy person to the depths of human dignity loss. It must be helped, cured and supported. I truly beg of all you who read this note to give with your heart and dig deeply for all those souls who suffer this tragic prognosis. I and my wife in Heaven thank you for any support you might provide.
CHUCK AND ELAINE GOSLEE
EASTHAM, MA 02642
NAPLES , FL 34114
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