Imagine finding out your parent has a deadly disease—and then not just one but several classmates find out their parents are suffering from the same disease. That’s what happened at Miami’s Killian High School. In all, five families with children attending the school in 1988 would have a parent diagnosed with ALS. During Thanksgiving of his senior year, Kevin Packman learned his father, Bruce, had been diagnosed with Amyotrophic Lateral Sclerosis (ALS). An avid baseball fan, Packman knew ALS was the disease that struck Lou Gehrig. “We didn’t know anything about the disease,” Kevin recalls. “At the time, there was no Internet, no resources in South Florida, and no one knew much about ALS. We were lost, confused, and angry.” ALS is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells or neurons responsible for muscle control. Over time, the upper and lower motor neurons degenerate or die and, unable to function, muscles gradually weaken, and patients lose their ability to move their body. The cause of the disease, discovered in 1869, remains a mystery, but strides to identify its origin and develop a treatment are being made. Inspired by his father’s fight against ALS, Packman wanted to make sure no family suffered from a lack of information, so he began a public awareness campaign. While in college in Texas, he was instrumental in getting then-Governor Ann Richards to declare April 1991 as Lou Gehrig’s Disease Awareness Month, and later in Washington, D.C., he helped draft legislation that ultimately became part of the Congressional Record in 1992 declaring May as National ALS Awareness Month. At the same time, his parents were determined to make ALS a household word, so Bruce and Cila Packman founded the ALS Recovery Foundation to raise money to find a cure for ALS. But it would be some time before the foundation would become active.

All too soon though, history would repeat itself, and Kevin heard from his high school friend Adam Silverman. His mother had ALS. “Early on we relied on the Packman family for information and support. Had it not been for Kevin and Bruce, I would have had no idea what ALS was,” remembers Silverman. “At first we thought it was a strange coincidence we attended the same high school because ALS was perceived as a rare disease. Now we know as many as 30,000 people in this country suffer from the disease at any one time.”

And then the unthinkable happened again. This time Killian High graduates Michael and Meredith Singer got in touch with Kevin—and their father, Robert J. Singer, M.D., had ALS.

Were these ALS cases just a coincidence, or was there something more to it?

“We do believe there are environmental factors at work with ALS,” says Walter G. Bradley D.M., F.R.C.P., professor and chairman emeritus of the Department of Neurology at the Miller School of Medicine. “There are repeated reports of areas that appear to have a higher incidence of ALS than should be the norm.”

The first major report came from Guam. Between 1940 and 1965, ALS among the Chamorros—Guam’s indigenous inhabitants—reached 50 to 100 times the rate in developed countries and became their leading cause of death.

Scientists believe the high rate was due to a toxic amino acid called BMAA, produced by cyanobacteria and found in the roots of the cycad, an ancient group of seed plants. The neurotoxic cycad seeds were often used in food and traditional medicines and consumed by fruit bats, which were once considered a delicacy on the island and eaten in large quantities. As the Chamorro population became more Americanized after World War II, the use of cycad seeds dwindled, and the rate of ALS decreased.

Then there is the troubling case of the Italian soccer players. A large study of 7,325 Italians who played professional soccer between 1970 and 2001 found that 15 developed ALS, which is about a six times the number that would be expected in that group of people.

“The research showed that Italian soccer players who had played for more than five years were 13 times more likely to develop ALS than the control group,” says Bradley. “I suspect that the fact that they play on natural grass with exposure to BMAA may be linked to their illness, but we haven’t proved it yet.”

Another link that hasn’t been proven yet is among U.S. veterans serving overseas. Prior studies found an increased risk of ALS in Gulf War veterans, but Bradley recently served on an Institute of Medicine panel that looked into the problem. And the panel’s report showed that the link may not just be the Gulf Wars, because the risk for ALS was also apparent for veterans of World War II as well as the wars in Korea and Vietnam.

Adding to the complexity of the ALS puzzle, researchers have discovered that the disease may also be inherited. The first gene linked to ALS is copper-zinc superoxide dismutase, commonly known as SOD1. Known mutations in SOD1 account for about 2 percent of all ALS cases.

“In light of all these factors, it is important to try and identify what the environmental exposures may be and whether genetic susceptibility plays a role,” says Bradley. “We’re looking at brains on autopsy, as ALS patients have BMAA in increased concentration. We are also looking at hair because that is something you can study in living patients.”

As the quest for more medical knowledge moved forward, so did Kevin and his mother, Cila, actively raising funds for the ALS Recovery Foundation. With the assistance of many community members, including Barbara Tifford, who was most helpful in sharing her knowledge and time, the foundation held its first event in May 2001, a 10K run and 5K run/walk, which raised approximately $125,000.

At the same time, another South Florida family, the Perezes, established the UM/ALS Research Foundation to raise money. Perez patriarch and ALS patient Jose Perez established the foundation and his sons, Jose and Alberto, have carried on the ALS fight in their father’s name. The money they raised went to support Bradley’s research team.

Two years ago the ALS Recovery Foundation and the UM/ALS Research Foundation joined together to form the ALS Recovery Fund (www.alsrecovery.org), a grassroots organization reliant solely on volunteers. Together they recently pledged $1 million to endow a chair in ALS in honor of Bradley, who recently retired from the Miller School.

“The merger of these two organizations made sense since we had one common goal,” says Kevin Packman, who is now president of the organization.

“Our goal in joining forces was to have the University of Miami at the forefront of ALS research and patient care,” says Jose G. Perez, a board member. “That was my father’s goal. As a son, I feel I still owe him a couple of things; one was ensuring my brother and I made my father’s goal of an endowed chair a reality. We’re now seeing the fruition of what we’ve accomplished. Through this chair, we’re going to be able to keep our father’s legacy alive for generations.”

“We wanted to avoid a vacuum for ALS research and patient care in South Florida,” adds Packman. “We collectively felt that there had been too much accomplished with ALS to let it slip away when Dr. Bradley retired. This gift will enable the medical school to recruit a prominent physician-scientist and guarantee that ALS patients in the southeastern United States and Americas will continue to receive the best care possible.”

Under Bradley’s direction, the ALS and Neuromuscular Programs at the University have grown into one of the largest ALS clinical and research programs in the country.

“The commitment of the ALS Recovery Fund of $200,000 per year for five years makes my dream of an endowed chair in ALS at the Miller School a reality,” says Bradley. “Over 16 years as director of the ALS and Neuromuscular Programs at UM, we’ve grown into one of the largest ALS clinical and research programs in the country, and the ALS Recovery Fund has already given over a million dollars to support those programs. And this new commitment shows the strength and support in the South Florida community for finding the cause and cure of this dreadful disease.”

“With the ALS Recovery Fund, our common thread is that we have all been touched by ALS,” says Donna Singer, the organization’s executive vice president and widow of Robert Singer. “That terrible and demoralizing disease brought all of us together as a family.”

Another ALS patient, Mark Kessenich Jr., and his family brought the ALS program at the Miller School more than $4 million. With this help, Bradley has run the Kessenich Family MDA ALS Center since it opened in March 1998. It was there that Donna Singer and Jose Perez first met when she attended an ALS support group with her late husband. The center assists patients and families by making sources of care available to patients regardless of their ability to pay. The ALS Recovery Fund, and previously the ALS Recovery Foundation, has provided annual grants of up to $10,000 to ALS patients in need of such resources. Mark Kessenich’s sons, Mark and Paul, and Barbara Robertson, continue to support the Kessenich Family MDA ALS Center, and with this new commitment from the ALS Recovery Fund, will be working to enhance services for ALS patients at the Miller School.

“The endowed chair is only our first step. Our organization is committed to a long-term partnership with the University to provide all the resources it needs to continue its cutting-edge research and treatment for ALS patients,” adds Adam Silverman, who is also a board member.

In the meantime, the research moves forward. Recently University scientists discovered that hyperbaric oxygen treatment may benefit some ALS

patients and studies are ongoing. Researchers continue to focus intently on BMAA, investigating whether the toxic amino acid is an underlying cause of the neurodegenerative disease. This research may be the most important breakthrough in the last few decades in the understanding of this fatal disease.

“If we’re right about the BMAA connection,” says Bradley, “we may be able to begin treating ALS within the next couple of years, and that’s what we’re really hoping for.”

ll too soon, though, history would repeat itself, and Kevin heard from his high school friend Adam Silverman. His mother had ALS. “Early on we relied on the Packman family for information and support. Had it not been for Kevin and Bruce, I would have had no idea what ALS was,” remembers Silverman. “At first we thought it was a strange coincidence we attended the same high school because ALS was perceived as a rare disease. Now we know as many as 30,000 people in this country suffer from the disease at any one time.”

And then the unthinkable happened again. This time Killian High graduates Michael and Meredith Singer got in touch with Kevin—and their father, Robert J. Singer, M.D., had ALS.

Were these ALS cases just a coincidence—or was there something more to it?

“We do believe there are environmental factors at work with ALS,” says Walter G. Bradley, D.M., F.R.C.P., professor and chairman emeritus of the Department of Neurology at the Miller School of Medicine. “There are repeated reports of areas that seem to have a higher incidence of ALS.”

The first major report came from Guam. Between 1940 and 1965, ALS among the Chamorros—Guam’s indigenous inhabitants—reached 50 to 100 times the rate in developed countries and became their leading cause of death.

Scientists believe the high rate was due to a toxic amino acid called BMAA, produced by cyanobacteria and found in the roots of the cycad, an ancient group of seed plants. The neurotoxic cycad seeds were often used in food and traditional medicines and consumed by fruit bats, which were once considered a delicacy on the island and eaten in large quantities. As the Chamorro population became more Americanized after World War II, the use of cycad seeds dwindled and the rate of ALS decreased.

Then there is the case of the Italian soccer players. A study of 7,325 Italians who played professional soccer between 1970 and 2001 found that 15 developed ALS, which is about six times the number that would be expected in that group.

“Italian soccer players who had played for more than five years were 13 times more likely to develop ALS than the control group,” says Bradley. “I suspect that the fact that they play on natural grass with exposure to BMAA may be linked to their illness, but we haven’t proved it yet.”

Another link that hasn’t been proven yet is among U.S. veterans serving overseas. Prior studies found an increased risk of ALS in Gulf War veterans, but Bradley recently served on an Institute of Medicine panel that found the risk for ALS was also apparent for veterans of World War II as well as the wars in Korea and Vietnam.

Adding to the complexity of the ALS puzzle, researchers have discovered that the disease may also be inherited. The first gene linked to ALS is copper-zinc superoxide dismutase, commonly known as SOD1. Known mutations in SOD1 account for about 2 percent of all ALS cases.

“In light of all these factors, it is important to try and identify what the environmental exposures may be and whether genetic susceptibility plays a role,” says Bradley. “We’re looking at brains at autopsies, as ALS patients have BMAA in increased concentrations. We are also looking at hair because that is something you can study in living patients.”

As the quest for more medical knowledge moved forward, so did Kevin and his mother, Cila, actively raising funds for the ALS Recovery Foundation. With the assistance of many community members, including Barbara Tifford, who was most helpful in sharing her knowledge and time, the foundation held its first event in May 2001, a 10K run and 5K run/walk, which raised approximately $125,000.

At the same time, another South Florida family, the Perezes, established the UM/ALS Research Foundation to raise money. Perez patriarch and ALS patient Jose Perez established the foundation, and his sons, Jose and Alberto, have carried on the ALS fight in their father’s name. The money they raised went to support Bradley’s research team.

Two years ago the ALS Recovery Foundation and the UM/ALS Research Foundation joined together to form the ALS Recovery Fund (www.alsrecovery.org), a grassroots volunteer organization. Together they recently pledged $1 million to endow a chair in ALS in honor of Bradley, who recently retired from the Miller School.

“The merger of these two organizations made sense since we had one common goal,” says Kevin Packman, who is now president of the organization.

“Our goal in joining forces was to have the University of Miami at the forefront of ALS research and patient care,” says Jose G. Perez, a board member. “That was my father’s goal. As a son, I feel I still owe him a couple of things; one was ensuring my brother and I made my father’s goal of an endowed chair a reality. We’re now seeing the fruition of what we’ve accomplished. Through this chair, we’re going to keep our father’s legacy alive for generations.”

“ We collectively felt that there had been too much accomplished with ALS to let it slip away when Dr. Bradley retired,” says Packman. “This gift will enable the Miller School to recruit a prominent physician-scientist and guarantee that ALS patients in the southeastern United States and the Americas will continue to receive the best care possible.”

“The commitment of the ALS Recovery Fund of $200,000 per year for five years makes my dream of an endowed chair in ALS at the Miller School a reality,” says Bradley. “Over 16 years as director of the ALS and Neuromuscular programs at UM, we’ve grown into one of the largest ALS clinical and research programs in the country, and the ALS Recovery Fund has already given over a million dollars to support those programs. And this new commitment shows the strength and support in the South Florida community for finding the cause and cure of this dreadful disease.”

“With the ALS Recovery Fund, our common thread is that we have all been touched by ALS,” says Donna Singer, the organization’s executive vice president and widow of Robert Singer. “That terrible and demoralizing disease brought us together.”

Another ALS patient, Mark Kessenich Jr., and his family brought the ALS program at the Miller School more than $4 million. With this help, Bradley has run the Kessenich Family MDA ALS Center since it opened in March 1998. It was there that Donna Singer and Jose Perez first met when she attended an ALS support group with her late husband. The center assists patients and families by making sources of care available to patients regardless of their ability to pay. The ALS Recovery Fund and previously the ALS Recovery Foundation have provided annual grants of up to $10,000 to ALS patients in need of such resources. Mark Kessenich’s sons, Mark and Paul, and Barbara Robertson continue to support the Kessenich Family MDA ALS Center, and with this new commitment from the ALS Recovery Fund, will be working to enhance services for ALS patients at the Miller School.

“The endowed chair is only our first step. Our organization is committed to a long-term partnership with the University to provide all the resources it needs to continue its cutting-edge research and treatment for ALS patients,” adds Adam Silverman, who is also a board member.

In the meantime, the research moves forward. Recently, University scientists discovered that hyperbaric oxygen treatment may benefit some ALS patients. Researchers continue to focus intently on BMAA, investigating whether the toxic amino acid is an underlying cause of the neurodegenerative disease. This research may be the most important breakthrough in the last few decades in the understanding of this fatal disease.

“If we’re right about the BMAA connection,” says Bradley, “we may be able to begin treating ALS within the next couple of years, and that’s what we’re really hoping for.”