About Us

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Meet Barbara and Stephen Byer​

We are the parents of Benjamin Saul Byer, diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 2002 at the age of 31. At the time, we didn’t know very much about this disease. We felt alone and frightened, but also compelled to learn all we could from researchers, neurologists, clinical trials, forums, and research studies. We shared what we learned with Ben and many others in the ALS community throughout the world. Ben’s symptoms slowed and his condition continued to decline, but our commitment to be a beacon of hope and connection for all those diagnosed with ALS/MND has never faltered.

After Ben’s death in 2008, we created ALS Worldwide to continue the search for effective treatments, to support persons and their families dealing with ALS/MND, and to share relevant information with them. We created the ALS Worldwide website to provide care and support, funded promising research, traveled the globe visiting ALS families, and continued to learn all we could from dozens of researchers and neurologists.

Today

In recent years, the day-to-day needs of patients and their loved ones has become our focus. Patient symptoms change and intensify frequently. The need to speak with someone knowledgeable and supportive becomes imperative. This is the lifeline we offer. Caregivers face unique challenges that can be soothed through a conversation. Filling this important niche in services for the ALS community is one we gladly accept. When Ben was diagnosed, we learned, despite disappointment, sadness and loss, there is also a spirit of hope that lives among so many stricken with ALS. We are eternally grateful for the willingness of hundreds of ALS patients and their families to share their pain, love, hope, grief, and fear.

In the Beginning

The impetus for creating this legacy was initiated by our close friend, Dr. Paul Kachoris. “You must make certain all the important information you’ve gleaned through these past years is not lost.” We are indebted to his support and encouragement. Thomas Basting, Sr., agreed to join our board as Legal Counsel, Dr. Michael Schafer agreed to be our Medical Director and James P. Bennett Jr., MD, PhD, became our Chief Scientific Officer. Their trust and support enabled us to pursue research avenues, medication venues and publication opportunities.

Neurologists and Researchers

In our travels throughout the United States and abroad, we met many brilliant scientists, researchers, physicians, and professors. Their willingness to meet with us, share information and support our efforts was profound. We are so appreciative of their experience, knowledge, and friendship.

  • Professor Dame Pamela J Shaw, University of Sheffield, UK
  • Achilleas Gravanis, PharmD, PhD, University of Crete Medical School, Greece
  • Ghazaleh Sadri-Vakili, PhD, Harvard Medical School, Massachusetts
  • Professor Nicholas D. Mazarakis, Imperial College, London, UK
  • James A. Neubrander, MD., Medical Director, Islen, NJ
  • Zachary Simmons, MD, Penn State Hershey Medical Center, Pennsylvania
  • Ammar Al-Chalabi, PhD FRCP, Kings College, London, UK
  • Hiroshi Mitsumoto, MD, DSc, Columbia University Medical Center, New York
  • Jonathan Katz, MD, Forbes Norris MDA/ALS Clinic, California
  • Robert Miller, MD, Forbes Norris MDA/ALS Clinic, California
  • Raymond Onders, MD, Case Western Reserve, Cleveland, OH
  • Peiman Hematti, MD, Clinical Cell Therapy Trials, University of Wisconsin
  • Zachary Simmons, MD, Penn State Hershey ALS Clinic Director
  • Merit Cudkovitz, MD, Director Harvard Medical School

More than 35,000 patients and their loved ones worldwide have benefited from the information we gained which encompasses recommendations for symptom relief medications, emotional support, personal care, positivism, and hope.

A Family Team Effort

team | ALS Worldwide

Our daughter Sarah Byer and her husband Barry Wein, both talented writers, counselors, and fund raisers, joined us in 2012, to help us take our efforts to the next level. For the next five years, we provided funding for promising research, expanded our counseling efforts, created several publications highlighting researchers in the UK, Israel and Mexico. We investigated ALS clinics and stem cell protocols and shared results with the ALS community. Between Ben’s film and our website, we believe ALS has come to be understood as an under-funded and a far more expansive disease affecting many more than the 35,000 known cases in the US. By 2017, it became clear that effective research funding would require many millions of dollars that an organization of our size might never achieve. Instead, we decided to focus our efforts on awareness and counseling, so essential in the day to day lives of those with ALS.  This effort continues to this day.

Our daughter Rebeccah was a lifeline for Ben. She welcomed him and his son John into her home, cared for both of them for more than three years. When BuNaoGao was discovered to treat ALS, she cooked the mass of herbs that arrived from China, never complained about the smell, parented John as if he were her own son, and fundraised for Ben’s film Indestructible.

In Rebeccah’s own words,

But the true reality is, perhaps just because of who Ben was and who I am, we made it OK. We laughed, we had fun, we figured it out. I tried my best, and so did Ben. We definitely had some troubling moments, and bathing and feeding your older brother was not ideal for either of us. But, as Ben always said, ‘it is what it is.’ I cherish those times, and I cherish that experience.”
rebecca | ALS Worldwide
ben | ALS Worldwide
“I never wanted to be a member of this club. No one does. But I am proud to fight tooth and nail alongside some of the most courageous, dedicated, and compassionate people I have ever met. The patients, their families, health-care professionals, and organizations who are committed to ending this disease have redefined the word strength for me. We now have an opportunity to do with a film what many ALS patients are unable to do for themselves. To be heard. To say to the world, this is ALS. This is ALS. This is ALS. I don’t pretend to think that Indestructible speaks for every ALS patient. But it speaks for some. And that’s a start.”

Benjamin Saul Byer
1971- 2008