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`Wonder Woman’ launches myelofibrosis research foundation


 

When Lynda Carter talks about her late husband Robert Altman, you can sense right away that this was a love affair for the ages.

“As I’ve often said, if you were a friend of Robert’s, you were one of the luckiest people in the world,” said Ms. Carter, the singer-songwriter and actor best known for her role as Wonder Woman in the 1970s TV series, who married Mr. Altman, an attorney, in 1984.

For Ms. Carter, Mr. Altman, and their children, Jessica and James, everything changed in 2017, when Mr. Altman was diagnosed with myelofibrosis, a rare bone marrow disorder – about one case is reported per 100,000 Americans each year – that was found during routine blood work.

“Robert was never sick a day in his life,” she said in an interview. “He skied and swam, and in many ways we were in the prime of our lives together. When he was initially diagnosed, we weren’t even clear what he had. The buzzword was that he had a rare blood disorder, not cancer.”

The family was told to wait and see if the disease would get worse, which it did, unfortunately, at the exact time COVID-19 hit.

This condition can progress from myelofibrosis to secondary acute myeloid leukemia, a rare blood cancer, said Michael Caligiuri, MD, a leading researcher in immunology, lymphoma, and leukemia and president of City of Hope National Medical Center, Duarte, Calif., one of the largest cancer research and treatment organizations in the United States.

“This disease is chronic and slow changing, but when it progresses more acutely to a form of leukemia, it can advance rapidly,” he said.

At the acute phase, there’s not much that can be done for the patient.

“This becomes very much a life-and-death situation,” he said. “You want to hope for the best, but there needs to be an expectation of the worst in terms of trying to prepare the patient and the family for what may come so that they can start to psychologically and legally put the person’s life in order.”

Despite every effort, Mr. Altman died in February 2021 at the age of 73.

Now, to honor her husband, Ms. Carter is gifting her time and resources to create the Robert & Lynda Carter Altman Family Foundation Research Fund, working with the Translational Genomics Research Institute, a leading biomedical research institute at City of Hope.

The goal: To speed up critical research that will improve early detection and survival for this hard-to-treat blood cancer.

“I’m excited to be a part of this team and to know that I may play a small part in helping other families facing this same diagnosis,” Ms. Carter said. “It’s thrilling seeing the progress these scientists are making, from genomic research into a universe of trillions of codes that might actually become a drug therapy someday.”

With the creation of the foundation, there will be funding to develop better diagnostics and better treatments.

“In many instances, this research will shed light on other related disorders, too,” said Dr. Caligiuri. “Cancer is a disease of the genes, and in most cases, we’re not inheriting from our mothers or fathers, but the DNA gets switched around in one of the trillion cells in our body, the way a word is misspelled.”

What happens next is that the cell doesn’t die.

“Instead, it undergoes a nuclear reaction and grows and grows,” he said. “In this case, the first evidence of a problem was myelofibrosis. That ticking time bomb continued until it exploded into leukemia.”

Dr. Caligiuri said the goal of their research will be to develop a device that can rearrange that DNA or block the DNA changes so the disease doesn’t progress to leukemia or, if it does, so “that we can turn it into a chronic condition, not an acute one that’s life-threatening.”

For Ms. Carter, this foundation is one very heartfelt way that she can honor her husband’s legacy.

“When I lost Robert, I was left with so many questions,” she said. “I wanted to understand why rare cancers are so difficult to treat and what research or treatment advances were being made to change that. Robert was never one for self-aggrandizement, but I think he would like this. I think Robert would really be touched by this.”

A version of this article first appeared on WebMD.com.

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