Athletic, vivacious, successful, Evelyn “Evvie” Heilbrunn was enjoying life as a patent lawyer, sports fan and mother of four when she learned in 2000 that she had breast cancer. After a mastectomy and radiation treatment, she beat that “nuisance,” as she called it. But in 2009, she was diagnosed with Parkinson’s disease. After extensive therapy and drug treatment, she felt that was fairly under control, though it is incurable. (Now.) Then, in 2011, she developed breast cancer again, and learned she has the same genetic mutation that recently caused actress Angelina Jolie to undergo a double mastectomy.
Faced with this barrage of physical obstacles, the 57-year-old Great Falls resident might reasonably be expected to slow down, smell some roses. Instead, Heilbrunn is training to climb Mount Everest, where there are no roses. She’s doing it as part of a campaign to raise money for an innovative new treatment to create stem cells without embryos and use them to replace the faulty cells that cause Parkinson’s.
Before breast cancer, before Parkinson’s, Heilbrunn had a “bucket list,” and Everest was tops on it. “It’s got a mystique to it,” she said the other day. “It’s this magical mystery place that not everybody gets to go to. It was just something I wanted to do.”
Heilbrunn is joining a group of Parkinson’s patients from the Scripps Clinic and Research Institute in La Jolla, Calif., who are part of “Summit 4 Stem Cell,” and who are climbing every available hill and mountain over the next five months before heading to Nepal in October. Another group from Scripps climbed Mount Kilimanjaro last year, led by nurse practitioner Sherrie Gould. The goal, ultimately, is to raise $5 million to fund the research that could, ultimately, stop the progression of Parkinson’s.
“This could help mlllions of people,” Heilbrunn said. “It can help me, so I don’t end up in a wheelchair.”
The group, eight of which are being filmed for a documentary on both the trek and the stem cell research, is not aiming for the summit. But they are aiming for Everest’s base camp at 17,600 feet, on Heilbrunn’s 58th birthday in October, which itself takes nearly three weeks to reach, and then another 600 feet up from there, to a peak called Kala Pattar, with a stunning view of the mountain.
And how can you keep ‘em down in a wheelchair when they’ve seen Kala Pattar?
Heilbrunn is a native of Upper Arlington, Ohio, a suburb of Columbus, and her Ohio roots, and the death of a close Ohio friend, led her to Scripps, and then to Everest. A group of grade school friends had always stayed in touch, made easier by Facebook, and in 2011 she learned that one of them, Greg Hadder, was undergoing treatment for lung cancer while she was dealing with breast cancer.
The two shared experiences, home remedies and shoulders. But while Heilbrunn’s condition improved after a second mastectomy, Hadder’s did not and he died last August in Columbus. Heilbrunn returned to her hometown, and met Hadder’s brother Tom, who lives in Southern California. Standing outside Greg Hadder’s home, the two discussed their bucket lists. Heilbrunn told Tom Hadder, “Before I go, I really want to go to Mount Everest.”
Tom Hadder told her that his doctor and nurse at the Scripps Clinic were taking some of their Parkinson’s patients to Mount Everest in 2013. “We looked at each other and started to cry,” Heilbrunn said. “I felt it was Greg that was making this all come together.”
She asked the folks at Scripps if she could join, and they welcomed her. Then she mentioned it to her other friends in Ohio, and another longtime pal, Rick Whipple, said Everest was on his bucket list too. Now she had a partner for the adventure.
“What an amazing thing can come out of a series of tragedies,” Heilbrunn said. “It’s the most wonderful thing that’s ever happened, aside from having my kids. Things like this don’t happen to me. I have s—— luck.” (Heilbrunn is not above a little adult language here and there.)
So she has been hiking and climbing, preparing for a series of strenuous climbs with the Scripps team later in the summer and fall. And she has also educated herself in the matter of induced pluripotent stem cells, which act like embryonic stem cells but don’t require embryos. Instead, researchers take cells from a patient’s own body and clone those. This approach was discovered in 2006 and was awarded the Nobel Prize in medicine last year.
These non-embryonic stem cells can become almost any kind of cell in the body, and should be less prone to rejection by a patient because they originate with the patient. In the case of Parkinson’s, the stem cells are coaxed into dopamine-producing neurons and injected back into the patient’s brain, replacing the depleted dopamine and restoring movement ability. But the cells take months to grow and are difficult to mass produce, so they have not attracted funding from drug companies. Nurse practitioner Sherrie Gould at Scripps said the project is hoping to win a grant from part of a $3 billion fund created by California taxpayers for stem cell research.
The research project is led by Jeanne Loring, head of Scripps’ Center for Regenerative Medicine, and Melissa Houser, clinical director of Scripps’ Parkinson’s Disease and Movement Disorder Center. Gould coordinates patients with Houser and led last year’s climb up Mount Kilimanjaro, which she said raised $300,000.
“People are going to be watching this project like crazy,” Gould said, because it has the potential to be used for many neurodegenerative disorders. “We’re replacing the one neurotransmitter that causes Parkinson’s disease,” she said, with testing to begin soon on rats.
“This has a huge chance of being successful,” Gould said. “And I think it will change the way we look at medicine today.”
Heilbrunn is excited to be part of the drive to support the research, as well as crossing off the top item on her bucket list. Though medication and therapy have steadied her Parkinson’s, her memory isn’t what it was, and she still has bad days. “When your body starts to fail you,” she said, “when you’ve always been this athletic person, it scares the s— out of you. [Told you.] I think, ‘I don’t know if I can do it.’” But the prospect of Everest, of flying in to Katmandu at 9,000 feet and hiking six hours a day, pushes her forward.
“It’s gonna be amazing,” she said. “If I can do this, I’ll do Kilimanjaro.” And that wasn’t even on the list.
Heilbrunn is writing a blog, which you can follow here. There might be some more adult language. A more detailed article about the science of induced pluripotent, or non-embryonic, stem cells by the San Diego Union-Tribune is here.
Summit 4 Stem Cell is here, and you can donate to the cause here. Filmmaker Jeff Seckendorf has posted many videos about the issue and the expedition here, and he has a Kickstarter page here explaining the documentary he’s making about this.