Alzheimer's Club

"For a state with so many senior citizens, Florida was treated more like a toddler when it came to its efforts to cure Alzheimer's disease. The National Institute on Aging, which oversees federally funded Alzheimer's research, has designated seven Alzheimer's research centers in California. New York has three. Until recently, Florida had none. It was a noticeable slight for a state with an estimated 430,000 Alzheimer's patients - enough to fill Raymond James Stadium more than six times.

That changed in April, when a consortium led by the Johnnie B. Byrd Sr. Alzheimer's Center & Research Institute and the University of South Florida became the first Alzheimer's Disease Research Center based in Florida. NIA awarded the consortium $7.3 million in federal funding over 5 years. For the Byrd Institute, created in the tough world of Tallahassee politics, the recognition conferred big-league status. What some once dismissed as the pet project of former state House Speaker Johnnie Byrd Jr. is now a national player in Alzheimer's research.

As Creighton Phelps, who directs NIA's Alzheimer's Disease Research Centers program, put it, ``We were willing to invest in it because we thought the potential was there.'' Phelps said NIA was impressed with a number of things - the Byrd Institute's statewide team of researchers, a $15 million-a-year state commitment and the quality of the research it is doing. Byrd Institute discoveries are receiving national attention, most recently a study released in July in which their researchers and a team from the University of Helsinki showed that a naturally occurring protein called KDI tri-peptide may protect the brain and spinal cord from injury.

The institute's location at USF also will pay dividends for Bay area Alzheimer's patients and their families. The institute is participating in four clinical trials of experimental Alzheimer's drugs, in which about 40 people from the Bay area are enrolled. Seven more clinical trials are scheduled to start in the fall.

Honoring His Father

Before all of this, though, Byrd fought bruising battles with fellow lawmakers over funding for the center. His fight to build an institute, to help Floridians with Alzheimer's and honor his late father, who had the disease, held up passage of the state budget in 2003. Relations between Byrd and then-Senate President Jim King Jr., who wanted the state to create a biomedical research center to honor his parents, were so strained that the leaders dispensed with the usual handkerchief drop at the end of the 2004 session, a time-honored Tallahassee nicety that takes place in the state Capitol Rotunda signaling no hard feelings between the two chambers.

Byrd made no secret of his desire to see an Alzheimer's institute based at USF.

``Politically, they always say, `Don't ever let anybody know what you really want,' '' Byrd said. ``But I couldn't help it. That's what I wanted, to help 400,000 people [in Florida] who have Alzheimer's. Everybody had my number. I was wearing my heart on my sleeve.'' In the end, Byrd's persistence made an Alzheimer's research center at USF a reality. In 2002, lawmakers authorized a statewide Alzheimer's institute and included $20 million for a building.

In 2004, the Legislature renamed the institute in memory of Byrd's late father. The legislation also included $15 million a year from the state's alcoholic beverages and tobacco trust fund. The institute, based in a Tampa Palms office building, is building a state-of-the-art research facility and clinic at USF, scheduled to open in 2006. The Byrd Institute would not have been created without Byrd's vision and ``absolute dedication,'' said Huntington Potter, the institute's chief executive officer and scientific director. ``There was no other person who was going to take up this standard and push it,'' said Potter, a Harvard-trained biochemist and molecular biologist.

By weaving a groundbreaking network of Alzheimer's researchers across the state - USF, the Wien Center for Alzheimer's Disease & Memory Disorders at Mount Sinai Medical Center in Miami Beach, the Mayo Clinic in Jacksonville, the University of Florida and the University of Miami - the bid succeeded where previous bids for ADRC status had failed. ``That partnership is a very compelling and positive move,'' said John Morris, who directs the Alzheimer's Disease Research Center at Washington University in St. Louis. ``I think they can be an enormous force.''

The $15 million a year from the state also makes the Byrd Institute stand out. ``It's good funding,'' said Sid Gilman, program director for the Alzheimer's Disease Research Center at the University of Michigan, which doesn't receive state funding. ``They should be able to do a lot with that.''

Living With Alzheimer's

If you want to know what finding a cure for Alzheimer's would mean, ask Diane Ringer of Brandon. Ringer's husband, Tom, learned he had the disease in 2000. The experience has turned Ringer into an Alzheimer's activist. She leads a support group in Brandon and belongs to a second group. Against a backdrop of family photos in her den, Ringer smiles when she speaks of Tom, her husband of 54 years and the light of her life.

They were just a couple of young Michigan kids when they were married in 1951. Diane was 19. Tom, 24, a Navy veteran with dark hair and movie-star looks, was just starting with the Royal Oak Police Department. ``He was the handsomest cop in the department,'' said Diane, 73. They raised two children. Diane worked as a travel agent. Tom rose to the rank of commander of the uniform division in the department. They retired and moved to Florida. Tom enjoyed an active retirement, walking two or three miles a day and riding his bike regularly. Then, he showed signs of slowing down that turned out to be more than normal aging.

Tom shied away from golf because he had difficulty keeping track of his golf strokes. It was the beginning of Alzheimer's. These days, Diane visits Tom, 77, in the Brandon nursing home where he lives. He is in the final stages of the disease. ``Tom doesn't know me anymore,'' Diane said. ``He knows I'm somebody he likes, but he really doesn't know who I am.'' Diane said that had Tom's condition not been so advanced, he would have been eager to participate in clinical trials at Byrd Institute. ``He would have jumped in with both feet,'' Diane said.


Died On Election Day

Johnnie Byrd Sr. was what his son calls ``this Greatest Generation kind of guy.'' Byrd Sr., a high school valedictorian, had the smarts but not the money for college. He went off to World War II as a pilot and built a grocer's life as the owner of the Piggly Wiggly in rural Brewton, Ala. Byrd Sr. developed Alzheimer's in the early 1990s. He died on Election Day in 1998, the day his son was re-elected as a state representative. ``In a quiet moment on that day, I said I'd do whatever I could to save other people from that fate,'' Byrd said. Legislative leaders typically have their own priorities, causes for which they are willing to spend the coin of leadership.

For Byrd, a Plant City Republican, who served as speaker during the 2003 and 2004 sessions, his priority was building an Alzheimer's institute to fight the memory-stealing disease that claimed his dad. But even after Gov. Jeb Bush signed legislation in 2004 naming the institute after Byrd's father and allocating $15 million a year, there were legislative assaults.

In 2005, after Byrd's term as speaker, the state Senate passed a bill that would have made the Byrd Institute compete for the $15 million with other Alzheimer's researchers. The bill was not taken up by the House. ``It shouldn't be a monopoly by one institute,'' said Mike Fasano, R-New Port Richey, who sponsored the bill. Had that happened, the Byrd Institute never would have received Alzheimer's Disease Research Center status, said Potter, its chief executive. asano's bill also would have stripped Byrd's father's name from the center and replaced it with that of former President Reagan, who had Alzheimer's.

Fasano said he proposed the name change because a Reagan connection would give the institute national exposure and because many of his colleagues wouldn't back an institute with the Byrd name on it. ``You don't want to play politics with finding a cure for such a horrible disease,'' Fasano said. Byrd is diplomatic when asked how he felt about efforts to remove his father's name from the institute. ``They're in charge now, so I trust them to do what's right,'' he said. ``That's their job. They're the ones who have to decide what what to do.'' Byrd is the second powerful Tampa Bay area lawmaker to leave a lasting imprint on the area's health scene.

H. Lee Moffitt, a former House speaker from Tampa, fought his own battles to make a state-funded cancer center in Tampa a reality. He understands the battle Byrd waged. ``It takes a whole lot of perseverance,'' Moffitt said. ``There are so many obstacles, so many naysayers, so many people who, for political reasons, don't want it to happen.'' Being speaker gave Moffitt the leverage to help a cause dear to his heart, he said. ``You have the power that goes along with that position,'' Moffitt said. ``They listen to you more. You have the ability to influence the outcome that you don't have if you're a rank- and-file legislator.'' The H. Lee Moffitt Cancer Center & Research Institute at USF opened to patients in 1986.

Byrd says his vision is to eradicate Alzheimer's. ``When my seventh-grader says, `What was polio all about?' and you try to describe that to him, I hope one day our grandchildren will ask, `What was this thing called Alzheimer's?' ''"

Source: Gary Haber. Alzheimer's Center Brings Hope Closer. TBO.com News [FullText]