Melissa Nelson and other fully clothed execs get soaked for a cause in TIAA Bank Field pool

As State Attorney Melissa Nelson voluntarily fell backward into the TIAA Bank Field pool Tuesday — fully clothed — she thought of her grandfather.

Clem Corn lived a full life.

He played basketball for the University of Illinois, served in the U.S. Navy and worked as a mechanical engineer in Jacksonville and Tallahassee, where a hydroelectric generating station is named after him. He met his wife of almost 50 years on Jacksonville Beach while stationed in Green Cove Springs and they had four daughters, 11 grandchildren and 22 great-grandchildren.

What is ALS?: Zac Brown Band founding member John Driskell Hopkins reveals ALS diagnosis

1957-2020: Longtime WJXT TV-4 executive producer dies from ALS

But Corn was taken too soon.

He died in 1997 at age 74 of ALS, or amyotrophic lateral sclerosis, a lethal neurodegenerative disease. Nelson, 25 at the time, still feels the loss.

"Poppy" is why for the second year in a row she took a dip in the stadium pool for The ALS Association Florida Chapter's CEO Soak. She was one of a dozen executives to get soaked Tuesday.

30,000 people in U.S. live with ALS

Nelson remembers the long walks she took with her grandfather and the "life lessons" he taught her along the way.

"His family was his heart … He was a remarkable husband, father and grandfather," said Nelson, who named her first son, Clem, after him.

CEO Soak is the successor to the association's Ice Bucket Challenge of 2014, in which people were filmed pouring ice-cold water over their heads. Such events are designed to raise awareness and funds for ALS patient care, research and advocacy.

Nelson said last year's pool dip was warmer than she expected. But this year 300 pounds of ice was dumped into the home of the Jacksonville Jaguars pool to cool the water down. Jaguars mascot Jaxson De Ville helped with the ice dumping and, after the executives took their turns three at a time, jumped in himself.

As many as 30,000 people in the United States have ALS, also known as Lou Gehrig's disease, with 5,000 new cases diagnosed each year, according to Johns Hopkins Medicine. Most people who develop ALS are 40 to 70 years old.

The disease is always fatal, typically within two to five years from diagnosis.

"More than 500,000 people alive today are projected to die from ALS, so it is not as rare as some people think," said Ray Carson, president/CEO of The ALS Association Florida Chapter, and another executive who got soaked Tuesday. "The CEO Soak helps to raise awareness about the need for more research. This event also raises critical funds to support those families who are currently battling this disease."

For Nelson, taking part in the soak was a "very meaningful" way to honor and remember her grandfather.

"When he was diagnosed 26 years ago, we knew nothing about this disease," she said. "Even his doctors in Tallahassee could not figure out what was going on."

The Mayo Clinic finally provided answers and Corn was diagnosed shortly after retirement. The disease first took the use of his hands — he had used them "to build things, create things and fix things," Nelson said — then his voice and "the laugh we all loved so much" and ultimately his life.

"Perhaps the greatest curse," she said, "was that his mind remained completely intact as his body suffered."

Us against ALS': Jacksonville lawman, family make every minute count; CEOs join in fundraiser for nonprofit

Another impetus for her to join the soak was her friend Jimmy Judge, an assistant chief at the Jacksonville Sheriff's Office who was diagnosed with ALS in 2020. Judge was told he had only a year or two to live but is still fighting.

He and his wife, Shannon, have "been selfless in their commitment to giving voice to this cause," Nelson said.

Shannon Judge said of Nelson's advocacy, "We are happy that through our experience with ALS we can in any small way inspire people and raise awareness for the disease."

Such events help get "more attention paid to the disease," Nelson said. "Hopefully they will find a cure … There are really promising things happening."

More clinical trials, treatment needed

The U.S. Food and Drug Administration has called on an outside panel of experts to conduct a second review of an experimental drug treatment from a company called Amylyx. In March the panel rejected the drug, saying there was insufficient evidence it was effective. Additional analyses of data  data is to be considered at the second review in September.

Dr. Michael Pulley, medical director for The ALS Association Certified Treatment Center of Excellence at UF Health Jacksonville, said he did not view the Amylyx drug "as a real game changer."

Pulley, who joined the Tuesday soak, said he has no personal connections to ALS. But caring for people with the disease is his life's work and, as a result, he is an ardent advocate for them and the ALS Association.

ALS hope:  New drug extends patients' lives by months, giving hope for those facing such a 'brutal illness'

'Weaker I get, the louder I become': Ady Barkan, progressive activist dying of ALS, not done fighting for health care

"We need to continue to do anything we can to raise awareness, not only in the [wider] community but in the physician community," he said. More doctors need to be aware of the disease and its symptoms so their patients can get treatment — and into clinical trials — as soon as possible, he said.

"If we wait too long, the horse is out of the barn," Pulley said.

Patients and their families also need more support, he said. Caring for an ALS patient is "very time-consuming and costly," he said.

Taking a dip into a pool fully clothed to draw attention to their plight "is the least I can do," he said.

bcravey@jacksonville.com, (904) 359-4109

ALS ASSOCIATION FLORIDA CHAPTER

To donate, volunteer or get more information, write to 3242 Parkside Center Circle, Tampa, FL 33619; call (888) 257-1717; email info@alsafl.org or go to als.org/florida. To donate to Jacksonville soak participants' fundraisers, go to donate.fl.als.org/event/2022-ceo-soak-jacksonville/e392868.

SOAKED PARTICIPANTS 

•  Kayla Auguster, clinical data specialist, MDabstract

• Al Bagocius, senior living advisor, Oasis Senior Advisors

• Ryan Bauman, strategic partnerships/military, Western Governors University

• Ray Carson, president/CEO, The ALS Association Florida Chapter

• Stockton Eller, chief creative officer, Synergy Technologies

• Adam Foxworthy, area vice president, Maxim Healthcare Services

• Hampton Graham, chairman and CEO, Scott-McRae Automotive Group, and chairman, ALS Florida board

• Tully Lale, southeast regional manager, Western Governors University

• Adam McQuiston, owner, Finn Ryan Designs

• Melissa Nelson, state attorney

• Dr. Bjorn Oskarsson, director, ALS Center of Excellence, Mayo Clinic Jacksonville

• Dr. Michael Pulley, medical director, The ALS Association Certified Treatment Center of Excellence at UF Health Jacksonville

This article originally appeared on Florida Times-Union: ALS fundraiser: Jacksonville executives soaked in TIAA Bank Field pool