by Sue Tomchin
From the age of ten, Laurie Strongin showed a knack for leadership.
She served as class president at her elementary school in Chevy Chase, Md; captained her high school field hockey team; coordinated an international bicycle race in Hawaii shortly after graduating from Michigan; advocated for women’s issues in Washington; and worked diligently at Fannie Mae Foundation to increase availability of affordable housing for low-income citizens.
But the full scope of Laurie’s strength and ability to lead emerged when her son Henry Strongin Goldberg was diagnosed at age two weeks with a rare genetic disease, Fanconi anemia.
“Anyone who hasn’t had a chronically sick child likely has a hard time imagining what it’s like to have a child who is sick for months and years as opposed to hours or days,” says Strongin. “I approached life with Henry filled with hope and determination and optimism which ultimately had an extremely positive effect on the quality of his days and of
She and her family endured Henry’s eventual death at age 7, but used what their experience taught them to create an organization that has helped more than 35,000 sick children and their families. The Hope for Henry Foundation, which Strongin and husband Allen Goldberg founded in 2003, is reinventing how hospitals care for seriously ill children. She serves as the foundation’s CEO.
When Laurie and Allen married in the mid-1990s, Tay-Sachs was the only Jewish genetic disease for which there was a test, so they didn’t know they carried the gene for Fanconi anemia, a disease that leads to bone marrow failure.
When Henry was diagnosed, “I was only 30,” says Strongin, now 53. “Henry was my first child. My life up to that point had, quite frankly, been easy. Without even thinking about it, I went into overdrive and became dedicated to doing things that would save Henry, but also other kids.
“Imagine being a five-year-old stuck in a hospital for 40 days straight. That is what Henry faced time and again,” she says. “Allen and I believed that we could improve Henry’s days and contribute to his recovery if we could deliver as many of the joys of childhood as possible.” They celebrated birthdays and holidays with fanfare and arranged such special treats for Henry as seeing a Harry Potter movie on the day it reached theaters.
Strongin also raised research funds and organized bone marrow drives potentially to help Henry and others. She lobbied members of Congress on stem cell research, then highly controversial. “People making policy are affecting real peoples’ lives. If you have a personal experience that adds insight and contributes to positive change, you need to share it,” she says.
Strongin enrolled in a medical research trial and was the first to undergo Preimplantation Genetic Diagnosis (PGD), a screening technique that enables doctors to identify genetic defects and HLA typing in embryos created through in vitro fertilization.
“Institutions are very uncomfortable with change, so you have to be incredibly persistent and disruptive, but likeable. I’ve had to work really hard to change the system.”
“We pursued this technology nine times, but it never worked,” Strongin relates. “When you are the first in the world to try something novel, you are rarely the beneficiary of it,” she reflected. On her last attempt, she told a woman whose son was also suffering from Fanconi anemia about the procedure. That woman subsequently had a daughter whose cord blood saved her brother’s life.
When Henry died, Strongin knew that she couldn’t allow herself to become immobilized by grief. By that time, she had two other sons, fortunately born healthy.
“I was their only mom and I wanted them to have a good life,” she says. “I’m an emotionally healthy person, which is something I’ve worked hard for. If one thing I tried [to feel better] didn’t work, I tried another and another. I was very determined.”
Writing about her experiences helped her deal with her grief. That ultimately led to a book, Saving Henry, published in 2010.
And then there’s her work with Hope for Henry, which serves patients in four hospitals – Cleveland Clinic Children’s, MedStar Georgetown, Children’s National Medical Center, and Sinai Hospital in Baltimore. All year long, the organization provides an innovative patient incentive program and activities like movie days, visits from professional athletes, Super Hero parties and more. The organization embeds an on-site child-life specialist to oversee its work and further its mission: to entertain and reduce stress while empowering children to be active participants in their own care.
Now, a half-million dollar grant will enable Hope for Henry to introduce Super Path to Super Duper Better™, a new endeavor that will debut in five hospitals in 2018 and another 10 in 2019. Children will receive gift incentives to help them cope with surgery, tests, chemotherapy, radiation and other painful but necessary procedures.
Due to her unique work and perspective, Strongin is often asked to serve on panels and speak about the pediatric patient experience. In May 2018 she spoke before 1500 attending the Association of Child Life Professionals conference in Washington, D.C.
“Hospitals are rated on patient experience,” she says “What does that really mean? How quickly you are seen? Ease of parking? Or, is it really about your child’s quality of life and being seen as a person, not just a patient?”
“Institutions are very uncomfortable with change, so you have to be incredibly persistent and disruptive, but likeable,” Strongin says. “Change is not easy. I’ve had to work really hard to change the system.”