Stephanie Bohn: 4.17.16


Stephanie Atlas Bohn


Vice President, Marketing, Warner Bros.





BCM: If you could describe motherhood in one word, what would it be?

SB: Transformative

BCM: What’s one moment in your motherhood journey that has made you proud?

SB: Watching my five-year old, Lucy, place her two year old sister, Sadie, in her lap so she can “read” her a book. Nothing brings me more joy than to see my daughters bond. There are these little, magical moments that happen between the girls that remind me how profoundly they love each other.

BCM: Tell us about your journey once you found out that Sadie has Rett Syndrome.

SB:  I learned about Sadie’s diagnosis in an email. A genetic test report was sent to me with no explanation of what Rett Syndrome is and what it means for Sadie. It was a confusing list of gene variants and amino acids. We were on vacation for the July 4th holiday and none of Sadie’s doctors were reachable so we resorted to Google for an explanation. We learned that our 15-month old daughter would soon lose the ability to speak and use her hands purposefully. At 15 months, Sadie hadn’t begun to crawl or walk and the Rett statistics suggested she never would. Later in her childhood, breathing and digestion problems would likely set in, and her teen years may be met with scoliosis and seizures. Glancing at our beautiful baby girl giggling in her crib, none of this information made sense; it didn’t seem possible. My heart was shattered and I felt like my world was cratering.

After a few days, the despair and anger morphed into determination. Andy and I refused to accept that Rett Syndrome was going to be our daughter’s future and we resolved ourselves to do whatever was necessary to make that not so.

stephanie bohn sadie retts syndrome

BCM: What have you done to raise awareness and what can we and our audience do to help?

SB:  As I began to investigate Rett Syndrome, I came across a website for Rett Syndrome Research Trust (RSRT), an organization founded by a woman named Monica Coenraads. Her phone number was listed so I placed a call. Monica has a 21-year old daughter with Rett Syndrome and since 2008 she has raised over $34 million to support groundbreaking research. Monica shared candid and compassionate advice about what I should be prepared for and reminded me I’m not alone in this. Three hundred and fifty thousand families have daughters with Rett Syndrome (it only happens to females). But, most important, Monica said these five words, “I believe Rett is curable”. That’s exactly what I needed to hear.

With a tremendous sense of urgency to have the cure arrive during Sadie’s childhood, I sprung into action. In October of last year, my family did a segment on the TODAY Show which spurred other media opportunities and greatly expanded my social network. Several Facebook posts about Sadie inspired family, friends and even complete strangers, untouched by Rett, to reach out and offer support. We also helped RSRT plan a fundraiser in LA and promoted others in NY, San Francisco, Maryland, Philadelphia and London.

For Big City Moms readers moved to make a difference, here are some suggested ways to help:

Stephanie Atlas Bohn


BCM: We are in awe of you and your strength. Whom do you turn to when you need motivation and inspiration with helping to find a cure for Rett Syndrome?

SB: My mother Paula has always been my personal and professional inspiration. Tragically, she passed away a year ago after a brief but brutal battle with pancreatic cancer. She was the strongest, bravest and smartest woman I will ever know. I channel the advice she would dole out, “Sadie depends on you to stand up for her, to be her voice, to free her from Rett. Your bad days are nothing compared to hers. Keep at it for your baby girl as you know I would do for you.”

BCM: What is one piece of advice you want to pass along to your children?

SB:  Coined by Steve Jobs, “The people who are crazy enough to think they can change the world, are the ones that do.”

BCM: What is one piece of advice you would pass along to other moms?

SB:  Carve out time every single day to give your kids undivided attention. These are the moments that make memories.

BCM: What is your favorite thing to do to relax and unwind?

SB: Camp out at Starbucks, pop on my Bose noise cancelling headphones and disappear into the ‘Most Beautiful Songs in the World’ Spotify playlist while pouring over the latest issue of Fast Company.

BCM: If you could hand off one chore to someone else each day, what would it be?

SB:  Dishes. I would swap just about any chore to avoid loading and unloading the dishwasher. Very fortunately (and oddly), my husband finds doing dishes relaxing. Opposites attract!




FAVORITE FORM OF EXCERCISE: Long walks with my favorite podcasts

WHAT IS ON YOUR DVR? Supergirl which my older daughter Lucy and I love to watch together.

FAVORITE APP:  Vidmob. You can upload mobile video footage and have a professional editor create keepsake videos to share with friends & family.

FAVORITE KIDS STORE: Peek (an LA boutique that now sells online)

FAVORITE VACATION SPOT: With kids, La Quinta Resort in Palm Springs. Great pools & amenities for kids of all ages. With no kids, anywhere… just kidding, Italy.


About Rett Syndrome:

  • A severe neurological disorder caused by random mutation of a gene (MECP2) on the x-chromosome. The cause of Rett is known, specific and symptoms have proven in mice models to be reversible.
  • Rett Syndrome is a gateway to understanding and potentially curing other neurological disorders including Alzheimer’s, Schizophrenia and Bipolar Disorder.
  • After breast cancer no other women’s disease affects more people
  • Every two hours a girl is born with Rett Syndrome
  • Rett Syndrome is pacing to be the first curable brain disorder
  • We will make Rett history.