|Company Founded:||Paint Her in Color||Year Graduated:||2002|
|Title:||Founder and President||Degree:||B.A., Marketing and Sociology|
|Location:||Fishers, IN||Residence Hall:||Lyons|
How long does it take to find one’s authentic self? What does it take to find out who you really are, to look beyond the traditional measures of success to see what really matters and defines you?
For Laura Heim Spiegel, who graduated from the University of Notre Dame and had a fabulous, fast-track career with global pharmaceutical company Roche, her journey to her authentic self was ignited when her five-week-old baby was diagnosed with cystic fibrosis. Cystic fibrosis is a rare, potentially life-threatening disease that damages the lungs and digestive system and affects roughly 25,000 Americans.
Looking at her, Spiegel’s beautiful baby appeared perfectly healthy, yet a standard blood test done at birth revealed a genetic mutation for cystic fibrosis. A follow-up test confirmed the diagnosis.
Shell shocked and convinced the test results were wrong, Spiegel and her husband, a fellow Notre Dame graduate, began asking questions of the family’s doctors, nurses, and others involved in her daughter’s care. “It was a surreal experience.”
At the time, Spiegel had been working in healthcare for nearly ten years. Her passion was developing programs and tools to help people with chronic conditions manage the emotional and psychosocial barriers that can accompany an unexpected diagnosis. “I could talk the talk. I knew research. I could treat people compassionately. But I never thought it would be personal. Until you experience the emotional journey of having a child diagnosed with a serious condition yourself, you really don’t understand what it’s like,” she says.
Fortunately, the family found a phenomenal care team at Riley Children’s Hospital in Indianapolis and Spiegel was able to care for her daughter while continuing her upward climb at Roche. Still, the first three years of her daughter’s life was marked by ups and downs. When she was sick with a cold or flu, her cystic fibrosis made these common childhood illnesses last longer. Apprehensive, Spiegel and her husband were super attentive, listening to the intensity of their daughter’s coughing and learning to quickly employ high-powered antibiotics. Stress and worry took their toll. Spiegel was anxious and struggled to balance caring for her daughter’s cystic fibrosis with caring for her husband, her young son and her own emotional health.
Spiegel’s perspective finally shifted when one day her daughter’s pulmonologist, sensing where Spiegel was emotionally, held her hands, looked into her eyes and said, “Your daughter is going to live a long and full life, and it is your job as a parent and mine as a physician to help make that happen.”
“At that moment,” recalls Spiegel, “the door opened to not letting cystic fibrosis define our daughter’s life. My job as her parent is to help her stay healthy and make sure her life— and all of our lives—are as rich and full as possible.”
In 2015, while group marketing manager for strategy and innovation at Roche, Spiegel came to the realization that the path she’d been on for more than a decade was no longer the right path for her. “Time is a gift, and it’s not always guaranteed. I wanted to soak up as much time as I could with my daughter and son while they were little. And I wanted to give my all to them. So, I resigned,” she says.
Her intent was to take a few years off and then rejoin corporate America, but as her confidence in her daughter’s outlook grew, Spiegel committed herself to marching to her own tune. This included advocating for others facing similar challenges. She served as president of the board of directors of the Cystic Fibrosis Lifestyle Foundation in Indianapolis and board chair of the Riley Children’s Hospital Pediatric Patient and Family Advisory Council, a position she still holds.
“I realized that I was not alone in my emotional journey. I met dozens and dozens of parents who were experiencing many of the same pain points I was. Not just parents of children living with cystic fibrosis but parents of children living with many other complex health conditions. There were so many of us out there, and while our children’s diagnoses and day-to-day routines often looked very different, our emotional journeys as parents were very similar,” Spiegel says. “And nearly all of us struggled to find resources to help support our emotional well-being as caregivers.”
One day it hit her. With her background in the emotional and psychosocial challenges of managing chronic illness from her Roche days, her lived experiences as a parent and caregiver, and the multiple relationships and close friendships she’d developed within the parenting community, she could make a difference. She could become the resource so many were searching for and not finding.
The seed was planted but what it looked like was churning around in her mind when she gave an interview to a radio show. The interviewer kept framing his questions around the phrase “your daughter is sick” and “because of your daughter’s sickness.”
Something went off in Spiegel’s mind, another push, or even more so a strong shove, toward her authentic self.
“I had a visceral reaction to the word sick,” she recalls. “My daughter loves Minnie Mouse, fireflies and unicorns. She has friends, she plays soccer and basketball, and she fights with her brother. She is a spitfire, my salty sea cat. She has cystic fibrosis, but it does not define her. My job is to paint her in color, not define her in black and white.”
Spiegel’s life, nor her daughter’s, could not get any more authentic than that.
In 2019, Spiegel founded Paint Her in Color, a website that supports emotional well-being in parents of children with complex medical, developmental, and behavioral healthcare needs. The site includes a blog with stories from Spiegel as well as other parent bloggers from around the world, emotional support resources, tools for doctors’ visits, tips for caring for siblings, resources for daily encouragement, and a professional speakers’ series. Common themes are embracing uncertainty, wrestling down worry, finding gratitude, celebrating our children, practicing self-care, and seeking balance. The site encourages users that “no matter where you are on your journey, we hope our words resonate with you and inspire hope.”
Launching Paint Her in Color is a culmination of Spiegel’s journey to find herself, her true purpose and voice, something college and earlier life experiences did not do. “I had to redefine myself as a woman, first and foremost. For the longest time, I defined myself by concrete, tangible measures of success. I graduated number one in my marketing class at Notre Dame, I was the youngest person to achieve various positions at Roche, I always sought out promotions and awards. I had lived with that mentality for so long, and I couldn’t just flip a switch and make it go away,” she explains. “Over time, since I began writing professionally and launched Paint Her in Color, I have slowly let that go and embraced a more authentic version of myself and who I’m meant to be. I think that’s definitely made me a better wife and mother as well.”
She has also discovered the realities of a founder’s journey. Unlike technology startups that often have a myriad of resources available to them in the form of accelerators, angel investing groups, friends and family investors, and pitch competitions, Spiegel’s combination of global healthcare advocacy and freelance writing is not a business model that typically attracts external funders, so it is up to her to bootstrap Paint Her in Color. Her biggest challenge has been creating awareness.
“Over the last year, I’ve published articles in a number of different healthcare and parenting publications such as Kevin MD, Special Needs Living, Parenting Special Needs, Yahoo!, and Humana Press that reference Paint Her in Color and give it airtime. I’ve also partnered with scientists across the globe to write and publish more than 200 thought leadership articles. However, a resource, be it a product or service, can only help people if they’re aware it exists. Right now, the onus for promotion and the financial support for it stems largely from me,” Spiegel says.
Asked what her biggest wins to date has been and Spiegel beams with pride. Topping the list is her impact on families facing the same challenges as her own. “Since July 2019, Paint Her in Color has touched nearly 20,000 families from 80 different countries.”
Close behind is attracting 17 guest bloggers, including one from Ireland, whose own passion, diverse viewpoints, and personal stories have enriched the experiences and connection points parents have on the Paint Her in Color website. Says Spiegel, “They have young children, teenagers, and adult children living with everything from cystic fibrosis to congenital muscular dystrophy, cerebral palsy, autism spectrum disorder, leukemia, and blindness. They are psychologists, social workers, nurses, and educators themselves, which further broadens the perspectives that are offered.”
Another important milestone, and one Spiegel hopes to build upon, is establishing partnerships with 15 trusted, non-profit organizations that offer resources to help parents manage stress, communicate with partners and siblings of a child living with a medical condition, develop productive partnerships with their child’s physicians and therapists, and overall learn to care for themselves while caring for others. “These organizations believe in the mission and vision of Paint Her in Color and want to be a part of it. That’s very gratifying,” she says.
In the future, Spiegel plans to develop a pathway for engaging and onboarding corporate and non-profit partners willing to provide financial support for the website through sponsorships, grants or other opportunities.
Building a business is hard work but three things keep Spiegel motivated. First, she values the freedom and flexibility to work on her own time and her own schedule. Second, emails and messages from grateful parents are energizing, reminding her of her mission. Finally, she knows her children will look to her when creating their own adult lives.
“I want my kids to know that they can take the path less traveled. It’s okay to change course when you know with all your being that it’s the right thing to do for you and for your loved ones,” she explains. “Life is about more than the grade, the award or promotion. It’s about being true to yourself and using your talents and experiences to make the world a better place.”
Spiegel’s advice to future founders comes from the perspective of having found great success and satisfaction in the corporate world to pivoting to the great unknown and following her heart. “Don’t be afraid to fail. Dip your toe in the water and go from there. Above all, lead with character, trust your intuition and believe in yourself. You’ve gotten this far. You can do it.”