This article was originally published in the October 26, 2018, edition of The Forum of Fargo-Moorhead and is republished here in its entirety.
FARGO -- Doctors told Emily Whitehead’s parents that they should enter the 6-year-old in hospice care so her last days would be comfortable.
They had run out of weapons to fight the leukemia that she had developed a year earlier. After chemotherapy, she’d relapsed twice. Medical science seemed stymied.
But Tom and Kari Whitehead learned about an experimental treatment at the Children’s Hospital of Philadelphia -- so new that it had never been tried against her form of leukemia. The treatment disabled the virus that causes AIDS and manipulated it to genetically kill the cancer cells that were killing Emily.
The form of gene therapy called CAR-T therapy was considered risky -- and Emily’s condition deteriorated after given the treatment. Her blood pressure plunged and she required a ventilator to breathe.
But she survived, and today is 13, cancer free, and an 8th grader who enjoys art, makes YouTube videos and plays with Lucy, the family’s dog.
Emily and her parents will be among a roster of speakers -- including some of the world’s leading researchers in gene therapy and cell therapy -- at the Breakthrough Symposium here Tuesday, Nov. 6, and Wednesday, Nov. 7, hosted by Aldevron.
The public is welcome, but they must register and seating is limited: https://www.aldevron.com/rsvpsymposium.
“We’re very honored to come and share her story and inspire her team and put a face to somebody they directly helped,” Tom Whitehead said.
Aldevron, a Fargo-based biotechnology company, played a supporting role in Emily’s recovery, providing key materials used in her treatment, he said.
The idea for the Breakthrough Symposium emerged from the continual life-saving discoveries made in biotechnology, the observance of Aldevron’s 20th anniversary, and the firm’s recent move into a new $30 million building.
“It’s not a commercial for Aldevron,” said James Brown, Aldevron’s vice president for corporate development and conference organizer. “It’s what our clients in the field have accomplished.”
The conference will highlight work that is curing diseases and improving the quality of life for increasing numbers of people, said Michael Chambers, Aldevron’s chief executive officer and co-founder.
“There’s been amazing progress in medicine in many areas,” Chambers said. “I hope we can inspire people and encourage patients. Aldevron works with over 4,000 groups around the world. We do work with a lot of leading researchers and companies, and it’s a privilege to bring them to Fargo.”
Chambers hopes the symposium can become an annual event that draws people to Fargo, somewhat like the annual stampede that Great Plains Software, which was acquired by Microsoft, once held.
Aldevron, started by two North Dakota State University graduates in a small lab on campus, provides key materials including DNA to research and clinical labs around the world.
The conference, which will be held at the Hilton Garden Inn, is open to the science-minded public, but attendees must register. Local university students can attend, and some will be making poster presentations, Brown said.
Speakers include luminaries in biotechnology research, including Dr. Laurence Cooper, who heads ZIOPHARM, is a leading researcher in T-cell therapies to treat cancer. His techniques have been used by other researchers, who have applied them to other forms of cancer as well as other diseases.
“He’s an internationally known figure,” Brown said.
Dr. Matthew Porteus, a Stanford University researcher, focuses on genome editing to cure disease, especially diseases of the blood. He will talk about using the best gene-editing tools in the clinic.
Another leading researcher, Luk Vandenberghe of Harvard and MIT, an expert in gene therapy methods and applications, has developed “viral vectors” that are used to help people with hearing loss and other neurological disorders as well as many other diseases.
An Aldevron alumni, Michelle Berg, a vice president at Abeona Therapeutics, works in patient advocacy with families whose members suffer from rare diseases.
Advocacy from patients and their families, in fact, has been a big driver of biomedical research, she said. “It really has started around kitchen tables, basically,” she said, referring to the catalyzing spark families have provided for researchers.
As the first employee hired at Aldevron, founded in 1998, she has seen the proliferation of medical breakthroughs enabled by gene therapy and cell therapy innovations, which she said are coming at an accelerating pace.
“We’re going to see more of a waterfall effect of successes,” Berg said.
Emily Whitehead’s recovery from the treatment that saved her life was enabled by an arthritis medication never used before in a cancer patient that now is used routinely as part of the therapy, Tom Whitehead said.
“My wife and I worry every day (about a relapse) but we’re learning to live with that,” he said. “You can’t tell now that she had any treatment at all. As a parent, that looks like a cure to me.”
More information about the symposium is available online: www.BreakthroughSymposium.com.