Meet Laurie Strongin | Founder and CEO, Hope for Henry Foundation

We had the good fortune of connecting with Laurie Strongin and we’ve shared our conversation below.

Hi Laurie, can you share a quote or affirmation with us?
Dwell in Possibility.

When I was in college, I bought a refrigerator magnet with the simple phrase, “Dwell in Possibility.” I stuck that magnet on every refrigerator I owned until I got a stainless steel one about 30 years later. Stainless steel is magnet-unfriendly, which mattered not, since it has long since become my mantra.

What would you do if you were told that your two-week-old baby was going to die before he reached kindergarten?

That was a question that never occurred to me until I held my two-week old son Henry in my arms at my home in DC, as the head of genetics at Children’s National said the words “Fanconi anemia” to me in early November 1995.

It turns out that the answer to that question is that I would:

Search the world and assemble a team of doctors who, like me and my husband Allen, would refuse to accept Henry’s fate without a fight.

I would become a patient advocate for stem cell research and travel to the forefront of what was medically possible in an effort to save Henry’s life and that of other kids whose genes foretold an early and painful death.

I would become a pioneer on the medical frontier advocating for a new reproductive genetics procedure that landed my family in the middle of the raging stem cell debate of the mid-1990’s and on the cover of the New York Times magazine and on Nightline and ultimately saved countless young lives…just not Henry’s.

But along the way, I would learn the critical importance of living life to its fullest, having ice cream for dinner, staying up late, waking up for the sunrise, going to the show or the game or the beach, just in case the unimaginable happens.

What would you do if your seven-year-old son died after convincing you and everyone who knew him that he was invincible?

On what would have been Henry’s 8th birthday, my husband and I were forced to tackle that devastatingly heartbreaking question. Instead of planning a birthday party, we created Hope for Henry Foundation to fill a critical gap in services that we had experienced during the 2 ½ years we had spent in the hospital during and after Henry’s bone marrow transplant at age 4. Henry’s transplant took place in a hospital in Minnesota, after which he had every complication imaginable. Henry spent years – with his healthy younger brothers Jack and Joe – at hospitals from DC to Baltimore, New Jersey, New York, and Minneapolis. Regardless of where we were, we were able to access great medical care. But none of the hospitals had any sustained services that recognized that kids like Henry were totally normal kids and they needed to be able to do things that normal kids do even if – especially if – they were spending long periods of time in the hospital.

Being in the hospital is boring. It is scary. It is painful. It is lonely. It is isolating. It is that way if you are an adult. Just imagine if you are a kid.

That is why, 21 years ago, we founded Hope for Henry to reimagine the way that hospitals care for seriously ill children and their families.

We believed that it would be possible to change the quality of life and the medical outcomes of hospitalized kids by educating them and incentivizing them to do what they need to do to heal.

Today—21 years after we founded Hope for Henry—more than 130,000 kids and their improved paths to recovery are proof that we were on to something.

Dwell in possibility.

Alright, so let’s move onto what keeps you busy professionally?
As the Founder and CEO of Hope for Henry Foundation, I have built a high-performing organization that is transforming the pediatric patient experience and improving outcomes for children with serious illnesses. Under my leadership, Hope for Henry has raised more than $20 million, served over 130,000 children and families, and expanded to dozens of hospitals nationwide.

I have assembled an exceptional Board of Directors comprising influential leaders from business, media, and the community. These luminaries lend their talents and networks to advance Hope for Henry’s mission, alongside some of the nation’s biggest and most trusted corporate brands, like Paramount, Mattel, Lids, Georgetown Cupcake and Kendra Scott.

Hope for Henry’s evolution from a small, local nonprofit to a national organization reimaging how hospitals care for kids has required a dedication to social entrepreneurship, a laser-like focus on mission, incredible persistence, and patience which isn’t my strong suit. In addition to building a strong model of service, I remained dedicated to providing its efficacy. Our impact data which show a 98% improvement in pediatric patient experience and a 76% reduction in the need for sedation for procedures like MRIs using Hope for Henry’s program is driving demand from hospitals nationwide.

As a patient advocate, I have collaborated with Congressional leaders, testified before legislative committees, and served on or appeared before prominent healthcare policy panels, including for the Institute of Medicine and the John’s Hopkins Berman Institute of Bioethics. I routinely serve as a distinguished guest speaker at Grand Rounds at the most prestigious hospitals in the country and am a frequent university guest lecturer.

My work has been recognized in profiles in USA Today, The Washington Post, and on Good Morning America, PBS NewsHour, among other national media outlets. I received Children’s National Health System’s Chairman’s Special Award, Georgetown Pediatrics Flame of Hope Award, Children’s Charities Foundation’s Star for Children Award, Center for Nonprofit Advancement’s EXCEL Award for Outstanding Nonprofit Leadership, Irene and Abe Pollin Humanitarian of the Year Award, and have been recognized as a People magazine “Heroes Among Us.”

Let’s say your best friend was visiting the area and you wanted to show them the best time ever. Where would you take them? Give us a little itinerary – say it was a week long trip, where would you eat, drink, visit, hang out, etc.

I love to spend time outdoors exploring and discovering great places to meet friends for coffee, cocktails, and local shops. If my best friend and I had a week together, here is where I would take her to eat, drink, visit, and hangout:

Day One: Pack a lunch and head to Topanga State Park, where we’ll hike in Temescal Canyon. In the afternoon, have coffee and window shop at Brentwood Country Mart. Then, have dinner at Via Alloro in Beverly Hills.

Day Two: Hike in Runyon Canyon, followed by lunch at the Farmer’s Market at The Grove. In the late afternoon, visit the Hammer Museum in Westwood and then have a relaxing dinner at home.

Day Three: Visit The Getty and enjoy lunch there. Then head to Santa Monica, rent bikes, and ride to Venice to watch the skateboarders. Watch the Sunset over cocktails at Casa del Mar late in the afternoon and then have dinner at Elephante in Santa Monica.

Day Four: Drive up the Pacific Coast Highway towards Big Sur. Stop for coffee in Malibu. Visit a variety of vistas, including San Luis Obispo and McWay Falls. Stay at Glen Oaks Big Sur.

Day Five: Walk through the redwoods across the highway from the hotel. Drive to Pfeiffer Beach. Late lunch and drinks at Nepenthe. Evening campfire with s’mores.

Day Six: Breakfast at Big Sur Bakery. Find an excellent coastline hike. Relax in the afternoon with a bottle of wine by the fire.

Day Seven: Drive back to LA at the end of a perfect week.

The Shoutout series is all about recognizing that our success and where we are in life is at least somewhat thanks to the efforts, support, mentorship, love and encouragement of others. So is there someone that you want to dedicate your shoutout to?
My husband, Allen Goldberg, and my three sons, Henry, Jack, and Joe get my all-in Shoutout! The love, hope, and determination that drive me every day derives directly from them. Until the moment of parenthood, I hadn’t identified my life’s work. But when my firstborn was diagnosed at two weeks old with a rare, fatal disease, my purpose became clear. I would devote myself to showing my family the unconditional love and devotion I feel for them and to leaving the world a better place than I found it. For the past 20 years, I have been a fearless patient advocate and the founder and CEO of a nonprofit dedicated to improving the lives and recoveries of kids spending too much time in the hospital. I took what I learned about the importance of education and incentives in helping kids do what they need to do to adhere to complex medical plans. Having served more than 130,000 patients, my success is a testament to the unwavering support of my family.

Website: www.hopeforhenry.org

Instagram: https://www.instagram.com/hopeforhenry/

Linkedin: https://www.linkedin.com/in/lstrongin/

Facebook: https://www.facebook.com/hopeforhenry/

Youtube: https://www.youtube.com/results?search_query=hope+for+henry

Image Credits
Hope for Henry Foundation