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News & Features

A personal mission
PBM Products founder donates millions of dollars to help find cure for diabetes and Stargardt’s

by Donna C. Gregory
for Virginia Business
May 2007

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A helping hand
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The first clue that something wasn’t right came in kindergarten. “I failed the kindergarten eye chart,” recalls 21-year-old Brad Manning. Two years later, after trips to Columbia Medical Center, Johns Hopkins Hospital and other top medical facilities around the country, Brad received a crushing diagnosis: he had Stargardt’s disease, a degenerative eye condition that causes central vision loss.

This rare condition affects one in 10,000 people, and only one in 50 people are genetic carriers. Although Brad’s parents, Paul and Diane Manning of Gordonsville, weren’t aware of anyone in their families with Stargardt’s, their son’s diagnosis proved they were both carriers.

When their second son, Bryan, turned 6, he too, was diagnosed with Stargardt’s. Then, at age 16, Brad was diagnosed with juvenile diabetes, the same disease that younger sister Katie had struggled with from age 7. “Everybody wants perfect children and healthy children and any time you have one of these diagnoses, it’s devastating,” says Paul Manning.

He responded by taking action. In 1997, the business entrepreneur came out of semi-retirement to found PBM Products LLC, so he could raise money for diabetes and Stargardt’s research. The private company, based in Gordonsville, has annual revenues of $200 million and is the largest U.S. supplier of store-brand baby formula. It also makes a line of diabetes products, including glucose tablets, and contributes a portion of the sales to diabetes research.

On a personal level, Manning and his wife have donated more than $3.5 million toward research for juvenile diabetes and Stargardt’s. “I’ve been fortunate to be very successful in business and have been able to search out the best science to help find cures for these diseases,” says Paul.

The Mannings hope the research will help other families. For them, Katie’s diabetes was particularly trying. “The diabetes is much more challenging from a mother’s point of view,” says Diane, “because with Stargardt’s, their life is not at risk. They’re not going to die from it, so it’s more of an adaptation to life.”

Sometimes Katie suffered from seizures in the middle of the night when blood sugar levels dropped too low. For a period of five to six years, “I got up every night to check her blood sugar,” recalls Diane. She also accompanied her daughter on every school trip. Despite such measures, the Mannings strived for normalcy. “We really were committed to not allowing … the kids to use any of these [conditions] as a crutch,” says Paul.

Brad, now a senior majoring in finance at the University of Virginia, competes in swim meets, enjoys rock climbing and will travel to Latin America this summer. Katie also attends U.Va. as a sophomore where she studies history, while Bryan is a sophomore at Woodberry Forest School, a private boarding school.

“It is what it is,” Brad says of his Stargardt’s and diabetes. “Everyone has their problems, and I don’t feel like mine are any worse than anyone else’s.” Although he has peripheral vision, Brad has decided not to drive and requires online magnifiers and large-print books to read. Bryan, 16, is determined to drive and has a learner’s permit.

Manning and his wife have contributed more than $1 million to fund a promising new gene therapy for Stargardt’s called StarGen. It’s being developed by the National Neurovision Research Institute (NNRI) and Oxford BioMedica, a biopharmaceutical company in the United Kingdom. “We have identified the gene that is responsible for this disease, and this treatment is designed to replace the defective gene with a working copy of the gene,” explains Stephen Rose, chief research officer of the Foundation Fighting Blindness, the parent organization of NNRI.

The treatment is currently being tested in mice and will be ready for human clinical trials within the next 18 months. “Paul’s support is paramount to this project,” says Rose. The research also holds promise for finding a cure for macular degeneration, a condition similar to Stargardt’s that leads to blindness in the elderly.

Closer to home, the Mannings have donated $2.5 million to establish a program at U.Va. that involves transplanting insulin-producing cells in the bodies of patients with juvenile diabetes. Of the three patients who have received a transplant so far, all have either stopped or lowered their daily insulin injections. Dr. Kenneth Brayman, director of the Center for Cellular Transplantation and Therapeutics, says the research is “an important stepping stone [and] it could potentially help his kids.”

 

 


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