If cystic fibrosis is wiped out in our lifetime, Liza Kramer will have had something to do with it. Kramer has been working toward a cure since her daughter Emily was diagnosed with the disease at 6 weeks old.
CF is a progressive genetic disease primarily affecting the lungs and digestive system. It causes thick mucus to build up in the lungs, leading to life-threatening infections. Currently there is no cure.
So what do you do when your baby girl is diagnosed with a fatal illness? Liza and her husband, Michael, didn’t want Emily’s life to be defined by her disease. Certain things couldn’t be avoided—every day, hours spent on treatments to improve Emily’s lung function. And there were frequent hospitalizations when infections did arise. But they resisted the impulse to overprotect their child—encouraging her to enjoy the same parties, sports, and sleepovers as her friends. They wanted to give their daughter the gift of an ordinary childhood.
At the same time, Liza and Michael meant to do whatever it took to help find a cure for CF before it killed their child.
Since so few people have CF (just 30,000 nationwide), drug companies don’t have the motivation to fund the research needed to find a cure. That research must be paid for by individuals and by organizations like the Cystic Fibrosis Foundation. Life-enhancing breakthroughs have been made. Kids born with CF in the 1950s didn’t live long enough to enter grade school. Now the projected median life expectancy for a person with CF is the late 30s.
Emily is 28.
Emily grew up happy and emotionally secure, the oldest of four kids, part of a strong and supportive family culture. For years, Liza and Michael and their children were my neighbors. When I dropped by, Emily was usually hanging with her pals, or out on the front lawn playing her flute. Often, though, she’d be up in her bedroom, sprawled across her mother’s lap as Liza thumped on her back for hours to dislodge the gunk that threatened her ability to breathe.
Even so, Liza was able to maintain a cheerful, upbeat household. What had to be done for Emily (and later, for Annie, a daughter born with her own very challenging special needs) was woven into the fabric of a happy, close-knit suburban family life.
For Liza, taking the best possible care of her daughter has always included advocacy and fund-raising. On Emily’s first birthday, she and Michael wrote letters to loved ones asking them to mark the event not with baby gifts but with a donation to CF research. They raised $3,000. Over the years, the letter-writing continued, then morphed into emailing, its reach expanding as family and friends forwarded emails to others. Every year, Liza inspired a community of friends, family, and well-wishers to take part in the CF Foundation’s fund-raising stair-climb. To help fund CF Centers, Liza created and sold T shirts and mugs with the slogan “Support CF Research and We’ll All Breathe Easier.”
Emily, meanwhile, has refused to let CF hold her back. She graduated cum laude from the University of Pennsylvania; works in health care marketing at Penn Medicine, the University of Pennsylvania’s health care system; is pursuing a master’s degree in bioethics; and is a gifted writer and public speaker. She was awarded Penn’s Honorable Walter H. Annenberg award, which goes to “the student who has strengthened and improved the University of Pennsylvania’s student community through his or her communication service activities.” “She’s amazing,“ kvells Liza. “It’s an honor to be her mom.“
But Emily’s health has steadily deteriorated. “She may look healthy,“ says Liza. “But she’s not.“
Emily has just 37 percent lung function. Each day she takes 30 pills, receives 4 shots of insulin, and spends at least 3 hours on airway clearance and breathing treatments to salvage every ounce of lung function and put off end-stage treatment for as long as possible. She often requires hospitalization to receive lifesaving antibiotic treatment. Recently, one of the few antibiotics she could rely on to keep her alive stopped working for her.
“Emily’s situation is dire,” says Liza. “She’s running out of treatment options.”
As always, Liza channels her concern and alarm into advocacy. In February of 2011, the letter Liza and her family sent out in support of the CF Foundation stair climb brought in $10,000.
“We were shocked that we’d raised that much without even trying,“ says Liza. “We began to wonder—what would happen if we really tried? What if, as a family, we put all of our effort into raising money for CF research? We were desperate. We knew we had to try.”
In December of 2011, Liza and her family founded “Emily’s Entourage” (EE), a nonprofit devoted to raising the money and the awareness necessary to cure CF. They set up a website (for which Liza’s son Coby produced a video) as well as a Facebook page. Then they told everyone they knew.
“We thought we might bring in $20,000,” Liza tells me. “But in our first two months, we raised $45,000!” As of April 2013, that total is up to half a million dollars. “People really do want to help,” says Liza. “I’ve been blown away by how incredibly kind they are.”
Through Emily’s Entourage, Liza continues to raise money and awareness, but on a much larger scale. She now works with the many folks the site has inspired to pitch in, from the EE support groups that have blossomed on college campuses to the neighborhood businesses that have put EE donation boxes on their counters.
“It’s a simple equation,” Liza tells me. “The only hope for Emily is research that results in a cure. And the only way there will be research is funding.”
EE is a 501(c)(3) nonprofit with no paid staff. Every penny goes directly to the CF Foundation to fund live-saving research and therapeutics.
“We need breakthrough drugs to help Emily,“ says Liza. “But this isn’t just about my kid. There are 70,000 people in this world with CF. Our fight won’t be over till every one of them can take a deep breath.“
If CF is wiped out in our lifetime, Liza Kramer will have had something to do with it. But that’s not the goal. The goal is to find a cure for CF during Emily’s lifetime.
And time is running out.