Jeremy’s Story in the Winston-Salem Journal

July 24, 2022 - by John Hinton, Winston-Salem Journal: https://journalnow.com/owners-of-winston-salems-chilly-philly-join-with-the-father-of-a-lynch-syndrome-victim/article_9069eeb2-0485-11ed-9668-4b64e742c2ca.html

via Winston-Salem Journal:

When Jeremy Nottingham visited a doctor in the fall of 2019, his parents didn’t expect it to be anything serious.

Jeremy, a Secret Service agent, was young, 28, and fit.

But it was much more serious, his father, Junius Nottingham Jr., said last week. Jeremy, who graduated from Wake Forest University in 2013, was found to have stage 4 colorectal cancer that had metastasized to his liver.

A genetic test revealed Jeremy had Lynch syndrome, the most common cause of hereditary colorectal cancer, according to the federal Centers for Disease Control and Prevention.

Jeremy died on Nov. 22, 2021. He was only 30. He had worked as a U.S. Customs and Border Patrol officer in Charlotte before joining the Secret Service in 2016.

Jeremy, who majored in communications at Wake Forest, also served as a special agent with the U.S. Health and Human Services Office of the Inspector General.

Junius Nottingham and his wife, Sharon, have joined with the Rev. Frank Robinson and his wife, Wendy Robinson, both of Winston-Salem, in a fundraising effort to increase public awareness about Lynch syndrome.

“We don’t want another family to go through what we went through,” Nottingham said.

So far, the Colon Cancer Alliance for Research and Education for Lynch syndrome and their partners have raised $25,000, Nottingham said. Organizers have set a goal of raising $100,000.

“It’s not just about collecting money,” Nottingham said. “It’s important to use to educate people, so they are not in the dark like my wife and I were.”

The Robinsons operate Chilly-Philly at 454 Knollwood St. in Winston-Salem. Their business sells Philadelphia water ice in the small strip center behind the Arby’s restaurant on Stratford Road.

Frank Robinson is the senior pastor at Messiah Community Christian Church in Winston-Salem. Wendy Robinson is an administrative assistant at Mount Tabor High School.

Nottingham is the executive director of the national anti-fraud department with the Blue Cross Blue Shield Association in Washington, D.C.

People with Lynch syndrome are more likely to get colorectal cancer and other cancers at a younger age before 50, the CDC said, including cancers involving the uterine, stomach, liver, kidney, brain and certain types of skin cancers.

None of his son’s doctors told Junius Nottingham that if Jeremy Nottingham had been screened earlier in his 20s for Lynch syndrome, he would have survived, the elder Nottingham said.

“Jeremy saved my life because I had to go along with my wife get genetically tested,” Nottingham said.

After Junius Nottingham underwent a colonoscopy in January 2021, he was diagnosed with Stage 1 colon cancer and Lynch syndrome, he said. Nottingham has been treated for the disease, and has survived it for five months.

The gene for Lynch syndrome is dormant, but Nottingham is monitored every three months for it, he said.

Nottingham’s mother, grandmother and all of his aunts also died from cancer, he said.

“There was a history of cancer in my family, but we didn’t know anything about Lynch syndrome,” Junius Nottingham said.

After Jeremy died, his father contacted the CCRE for Lynch Syndrome, Nottingham said. He spoke to Sharon Perlman, the president and co-founder of the nonprofit organization.

Dr. Neil Perlman, Sharon’s brother and a co-founder of the organization, said that nearly 1.2 million in the United States have Lynch syndrome, but 95% don’t know they have the condition.

“What we are trying to do is to educate people and help them get screened properly,” Perlman said.

The Nottinghams also encouraged people who knew their son to donate money in his memory to the alliance rather than providing flowers for his funeral in December 2021 in Dumfries, Va., according to Jeremy’s obituary.

Lynch syndrome causes about 4,200 colorectal cancers, and 1,800 uterine cancers each year, the CDC said.

There is lack of public awareness about Lynch syndrome, even among health-care professionals, Nottingham said.

“I take this personally,” Nottingham said. “It’s a mission to me to get the word out there.”

Frank Robinson said he and his wife got involved in the fundraising effort in Jeremy Nottingham’s memory when Robinson received the Jeremy Nottingham Pro Humanitate Award, which provided him a scholarship while he was attending graduate school at Wake Forest.

Robinson said he decided to find out more about Jeremy Nottingham after Robinson learned that Nottingham was a Wake Forest graduate who died in November 2021.

“That hit me harder than anything else,” Robinson said about learning that Jeremy Nottingham had died.

That research led Robinson to learn about Lynch syndrome and contact Junius Nottingham through a social-media site. Robinson and his wife then joined the Nottinghams in the fundraising effort regarding Lynch syndrome in Jeremy’s memory.

“There is a reason why God put us together,” Wendy Robinson said.

Junius Nottingham said he appreciated the help that his family received from three Wake Forest employees — Steven Giles, an associate professor and chairman of the university’s Department of Communication, J. Bradley McIlwain, the university’s director of family giving, and Mike Haggas, the university’s associate dean for college development — in establishing the scholarship in the name of Jeremy Nottingham.

In May, Robinson received a master’s degree in communications at WFU. At the end of July, the Robinsons will set a table inside their business where customers can buy T-shirts for the fundraising effort, Wendy Robinson said.

The donors then will participate in a raffle for tickets to the Carolina Panthers home football games, she said.