When her daughter fell ill with a rare disease, Beth Frigola McGinn ’99 went searching for hope.
Ellie and Beth McGinn at the National Organization for Rare Disorders’ 2017 Rare Impact Awards where Ellie was honored for making a difference for people living with rare diseases. (Photo courtesy of Beth McGinn)
What if you were told that, by the age of 8, your otherwise healthy, outgoing, first-born child would need a walker? Or that by high school she’d be in a wheelchair?
What if, by some miracle of modern science, you could change the fact that people with her genetic condition rarely make it to adulthood?
If you’re Beth Frigola McGinn ’99, you move heaven and earth to find a cure.
In 2011, McGinn and her husband, Michael, became concerned when their toddler, Ellie, began falling down and suffering from pain and fatigue. After trips to several specialists in and around their hometown of Arlington, Virginia, Ellie was diagnosed with LBSL (leukoencephalopathy), a neurodegenerative disorder so rare that fewer than 100 cases exist worldwide.
Beth and Ellie McGinn help moderate a congressional panel on rare disease. (Photo courtesy of Beth McGinn)
Afforded little hope by doctors, the McGinns set out to give their daughter a better chance at life—even if they knew nothing about the mitochondrial disease ravaging Ellie’s brain and spinal cord. Today, their nonprofit, A Cure for Ellie, is a leading resource in the fight against LBSL, providing everything from public information and emotional support to funds for medical research.
“I get great satisfaction being able to be there for somebody, just giving them a shred of hope and talking through it,” says McGinn, who regularly communicates with parents coming to grips with the disease. “It heals my own wounds a little just to do that.”
When McGinn graduated from Rollins, she worked on Capitol Hill for about 15 years as a spokeswoman for various congressmen, committees, and campaigns. After Ellie’s diagnosis, she left her job as a communications director in the U.S. House of Representatives to concentrate full time on launching the foundation.
Because rare diseases such as LBSL typically receive little research funding, every dollar counts. The foundation, which has collected about $200,000, is pushing hard to spread awareness and raise money.
Dr. Ali Fatemi and Ellie McGinn at the Kennedy Krieger Institute. (Photo courtesy of Kennedy Krieger Institute)
In addition to generating a slew of media coverage, including a recent segment on NBC’s Today, McGinn has forged a strategic partnership with the Moser Center for Leukodystrophies at the Kennedy Krieger Institute and Johns Hopkins University in Baltimore. Together with Moser Center Director Dr. Ali Fatemi, she developed a seven-year, $2.2-million program—funded exclusively through donations to A Cure for Ellie—in hopes of discovering a breakthrough.
So far, the results have been promising. Ellie’s tailor-made cocktail of vitamins and antioxidants—while not a cure—has reversed her symptoms and made life much more manageable for the rising fourth-grader. Apart from wearing a helmet to school, there’s little indication anything is amiss.
Meanwhile, according to Kennedy Krieger, Fatemi and his colleagues are working on a research plan that involves some of the most pioneering techniques in neuroscience, from nanomedicine to stem cell therapy and gene editing.
“I’m very optimistic we’ll find a cure in Ellie’s lifetime,” McGinn says. “I don’t want to jinx anything, but the fact we have a research team looking into this, it’s encouraging and keeps us going. Dr. Fatemi is one of the world’s foremost experts in his field, but you can tell this isn’t just another medical project for him. The way he smiles with Ellie and gets down to talk on her level, it shows how much he really cares.”
The McGinns and the research team at Kennedy Krieger Institute. (Photo courtesy of Kennedy Krieger Institute)
Throughout this journey, McGinn says she’s witnessed “little miracles” that continue to strengthen her faith. One of the most interesting came a couple years ago when she approached Kennedy Krieger about conducting the research project.
That’s when she met Dara Schapiro Schnee ’93, the institute’s director of major gifts. After some small talk, both realized they were Rollins grads, instantly bonding over memories of Fox Day, the Alfond Pool, and residential life.
“I believe there are no coincidences, just God’s beautiful plan,” McGinn says. “Isn’t it fitting that Rollins College, our little slice of heaven on earth, played a small but important role in it?”
“I also felt like it was fate,” says Schnee, who introduced the McGinns to Fatemi. “It’s very rare that I meet someone like Beth who is so dedicated and passionate about finding a cure. She does her own research on the web and rallies people all over the world who support the cause. She’ll do anything and everything for her daughter.”
Perhaps the biggest compliment, though, comes from Ellie herself. "I'm proud of my mommy,” the little girls says, “because she is sweet, kind, loveable, and overprotective.”