|Ronnie Abdinoor was diagnosed with ALS in December of 2002. He was
the owner and operator of Lakeview Farm in Windham, Vermont, and also
raised trout and ran a nine-hole golf course on his property. He also
had a daughter, now 13. Ronnie died in October of 2004 due to
complications following the Beijing OEC transplant.
|Dr. Steven M. Albert is an Associate Professor of Clinical Sociomedical Sciences at the Mailman School of Public Health, Columbia University. His research focuses on neurological disease and its impact on health outcomes and subjective reports of quality of life. With support from NIH (NIMH), Dr. Albert and colleagues have followed patients and family caregivers confronting ALS, and tracking mental health in patient-caregiver pairs.
Dr. Stanley H. Appel is Chair of the Department of Neurology and Co-Founder of the Methodist Neurological Institute, and Professor of Neurology at Weill Medical College of Cornell University. He serves as the Director of the MDA/ALS Research and Clinical Center and is the former Director of the Alzheimer’s Disease Research Center at Baylor College of Medicine and previously served as the Director of the Jerry Lewis Neuromuscular Research Center at Baylor College of Medicine in Houston, Texas. He has authored some 175 articles in medical journals and is on the editorial board of the journal ALS and Other Motor Neuron Disorders.
In 2005, Dr. Appel received the Forbes Norris Award from the International Alliance of ALS/MND Associations.
|Howard Bergert was diagnosed with ALS on December 17th, 2002 and died
October 15, 2004. He worked as a traveling salesman for ten years
before co-founding Precision Associates, a rubber sealant
manufacturing company. An avid golfer, he first noticed symptoms of
the disease during an annual golf trip with his friends. He is
survived by his wife, Jane and 2 children, Brett and Allison, all of
|John Byer was three when filming began on Indestructible. Now he is seven. He likes Legos, Star Wars and baseball. His favorite foods are spaghetti, broccoli and candy. When John grows up he intends on becoming a police officer.
Stephen Byer became a full-time patient advocate when his son Ben was diagnosed with ALS in 2002. One of his major efforts has been to expand the use of a previously little-known herbal treatment for ALS called BuNaoGao, which has now been used by over 450 patients. Prior to that he was a private art dealer and business executive.
Steve is the father of five children, has eight grandchildren and has been married to his wife Barbara for 43 years.
|Barry Coughlin was a landscape surveyor until he was forced into
retirement due to physical difficulties and the need to reduce stress
in his life after he was diagnosed with ALS in 2001. He received his
license in 1993 and moved to Florida in 1998, eventually taking over
the company where he worked. Barry currently lives on his father’s
property in St. Elmo, IL.
Dr. Paul Alan Cox serves as the director of the Institute for Ethnomedicine in Provo, Utah and was formerly the director of the National Tropical Botanic Garden in Hawaii. His work providing scientific validation of traditional plant wisdom around the world has led to the development of five drugs currently in different stages of development, including prostratin, which seems to inhibit growth of HIV. In addition, he leads a team researching the entire canon of Swedish healing plants as the King Carl XVI Gustaf Professor of Environmental Science.
Dr. Cox is also a researcher with ties to the NCI, an author, a husband and father of five, and, if certain Samoan tribal chiefs are to be believed, the reincarnation of their god Nafanua.
|Dr. Daniel H. Gordis is Vice-President of the Mandel Foundation,
Israel and Director of its Mandel Leadership Institute. Since moving
to Israel and joining the work of the Mandel Foundation in 1998, Dr.
Gordis has been writing and speaking extensively on Israeli society
and the challenges facing Israel's future. His work has appeared in a
variety of journals and newspapers, including the New York Times and
the New York Times Magazine and has authored nine books.
|Dr. Hongyung Huang received his medical degree at the Xinjiang Medical Institute in China before spending the late 1990s as a postdoctoral student at Rutgers University, where he was introduced to olfactory ensheathing glial cells. In 2001, he did his first OEC transplant at Chaoyang Hospital, Beijing, and up until now he has done over 600 treatments for spinal cord injuries and over 150 for ALS patients.
|Marty Konieczny held a Masters in Aerospace Engineering and spent 20
years in the Air Force, retiring as a Lt. Colonel. During this time
he helped develop missile and satellite technology and humbly
referred to himself as ‘a rocket scientist.’ After retiring, he and
his wife, Lynn, moved to Ogden, Utah. In 1972, he became a born-again
Christian, and was a member and Elder of the Roy Bible Church. Marty
was diagnosed with ALS in August of 2002 and died on February 10th,
|Elio Marzullo emigrated from Sicily in the ‘70s and owned over 20
residential properties in Chicago. Was at one time Ben Byer’s
landlord. Diagnosed with ALS in February 2003, he died on May 10,
2004, leaving behind Maya, his wife, and Silvana, his daughter.
Dr. Robert G. Miller is Director of the Forbes Norris MDA/ALS Research Center at the California Pacific Medical Center in San Francisco; Clinical Professor of Neurology in the Department of Neurology at the University of California, San Francisco; Clinical Professor of Neurology and Neurological Sciences in the Department of Neurology at Stanford University Medical School; and Director of Neuromuscular Research and Chairman of the Department of Neurosciences at California Pacific Medical Center (CPMC) in San Francisco.
He is the author of nearly 200 scientific articles on neuromuscular disease and ALS, and chairs the Medical Advisory Board of the ALS CARE program, a North American ALS patient database project designed to enhance the standard of care for people with ALS.
|Alvin Mitchell, a member of the Air Force, was the aviation manager for Vice-Presidents Gore and Cheney. While cleaning a warehouse without proper protective gear, he was exposed to 4 and a half tons of Urea, a chemical used to de-ice planes and runways. He began experiencing symptoms of ALS a week and a half later. It took the military doctors six years to arrive at the correct diagnosis and he was awarded full disability only after writing to the President and both houses of Congress. Alvin died March 24, 2006.
|Annie Papoulias was diagnosed with ALS in 2000 at the age of 42. She was born in 1951 in Athens and has been married to her husband, Tony, since the age of 17. They have two daughters, Anastasia and Demi. Prior to her disease, Annie was a business administrator and Tony served as the director of information and technology for the Samos Agriculture Cooperative until his retirement in 2004.Annie is still
alive and is cared for by her husband, daughters and parents at their
home on the island of Samos, Greece.
Dr. Oliver Sacks was born in 1933 in London, England and earned his medical degree at Queen's College, Oxford. Since 1965, he has lived in New York, where he is clinical professor of neurology at the Albert Einstein College of Medicine, adjunct professor of neurology at the NYU School of Medicine and consultant neurologist to the Little Sisters of the Poor.
As a physician and a writer, Oliver Sacks is concerned above all with the ways in which individuals survive and adapt to different neurological diseases and conditions, and what this experience can tell us about the human brain and mind. His books exploring these themes have been bestsellers around the world and are used widely in universities in courses on neuroscience, writing, ethics, philosophy and sociology.
Dr. Teepu Siddique has directed the Neuromuscular Disorders Program at Northwestern University's Feinberg School of Medicine since 1991. In 1993, Dr. Siddique co-discovered the very first known cause of ALS: mutations in the SOD1 (superoxide dismutase) gene on chromosome 21. In 2001, his lab discovered the mutation responsible for juvenile onset ALS.
His awards include the Forbes Norris Award from the International Alliance of ALS/Motor Neuron Disease Associations in 1995; the Sheila Essey Award for ALS Research from the American Academy of Neurology and ALS Association, and the Third Annual Eleanor and Lou Gehrig Award from Columbia University College of Physicians and Surgeons in 1997.
In September of 2002, he diagnosed Ben Byer with ALS.
|Cary Smith, 38 years old, is a former golf pro and currently lives with his mother in Atlanta, GA. He had symptoms for approximately eight years before his diagnosis, which finally occurred on Sept. 13th, 2002, his 33rd birthday.
|Todd vanBodegom-Smith is a former three-time All-American weightlifter and ran a health club until his diagnosis of ALS in March, 2002. The following year, he moved to China to receive traditional therapies such as massage, acupuncture, Tai Chi and herbal remedies. He continues to live in Kunming with his new wife, Fan Fan.
|Danny Vyvey was diagnosed with ALS in 2002. The owner of a restaurant supply business, he became the first European to undergo Dr. Huang’s controversial OEC transplant and returned to Beijing a year later to undergo the procedure a second time. In 2006, he and his girlfriend had a baby girl and in December of 2007, Danny passed away from ALS.
|Dr. YongChao Xia worked as a neurologist at Beijing Medical College
(currently Medical School of Beijing University) for ten years until
1969, when he was reassigned to Provincial Hospital of Chinese
Medicine Gansu Province in northwest China, due to the Cultural
Revolution. There he provided medical services to locals including
many poor farming communities and also began traditional herbal
remedies. This led to the invention of BuNaoGao (“decoction for brain
nourishment”), a treatment for ALS he developed over the course of 25
years of research.