By David Davis
In July, when Stephanie Bohn’s (’03) daughter was diagnosed with a rare non-degenerative neurological disorder, she and her husband Andy were devastated. But within hours, Bohn, a UCLA Anderson alumna and currently vice president of marketing at Warner Bros. Digital, had “picked herself up off the floor” and “gone into action mode.”
Bohn quickly developed a marketing plan with a creative messaging strategy and a fundraising playbook. Her goal? To raise awareness about the disorder, known as Rett Syndrome, and to raise funds for scientific research.
Recently, Bohn spoke with UCLA Anderson about her daughter, Rett Syndrome and her efforts to save her daughter’s life.
Q. For those who have not heard of this before, what exactly is Rett syndrome?
I had never heard of it until we got the diagnosis with our youngest daughter Sadie. Rett syndrome is caused by a mutation in a gene called MECP2. It’s not an inherited trait, which is why most people whose children have it have never heard of it, because it’s nothing that they knew to look out for. It overwhelmingly affects girls. After breast cancer, no other disease affects more women. There are about 350,000 women and girls globally that have Rett Syndrome.
Q. What happens with girls who are diagnosed with Rett?
It’s not a fatal disease, but it is a disease that is incredibly devastating. When these girls are born, they develop normally for the first year or two of their lives. Then, regression sets in and the symptoms start to appear. You think everything is going fine, and all of a sudden your child cannot walk, cannot talk, cannot use her hands purposefully. Sadie is now 20 months old. She can’t hold her own cup or bottle. She can’t pick up a toy. She knows what she wants to grab, but she doesn’t have the motor planning to hold onto things.
Q. You mentioned that you had not heard of this before: why don’t most people know about Rett?
One reason is that, relative to diseases like ALS and cystic fibrosis, researchers only recently [in 1999] discovered the gene that causes Rett. Another thing is, this is a disease that only affects girls and women. One of the platforms that I’m trying to adapt is that women need to know about Rett because we need to popularize this. It shouldn’t be any less well known than diseases that affect both boys and girls.
Q. Is there hope for girls and women who have been diagnosed with Rett?
In 2007, a researcher named Dr. Adrian Bird proved that all of the symptoms of Rett can be completely reversed when the MECP2 mutation is addressed in laboratory mice. If there’s a way to translate this phenomenon in humans, this is a curable, reversible disorder and the thought is that Rett could be the first curable brain disorder. If Rett is cured it could be a gateway to potentially curing other neurological disorders, like Alzheimer’s, schizophrenia and bipolar disorder, and to understanding autism.
Q. What actions have you taken in this campaign?
My main platform is to raise awareness to cure this thing. What Anderson taught me was to be as strategic as possible and think about the goals up front, and then be as methodical as I can to stay focused on those goals. So, almost immediately, we reached out to media contacts. That’s the industry I am in. We went on The Today Show to tell our story, to reenergize families that are feeling a little hopeless that nobody cares about Rett, and to help with fund-raising. The nonprofit organization Rett Syndrome Research Trust recently raised over $1.5 million and our Today Show appearance was part of that effort.
Watch the segment about Sadie and Rett Syndrome on The Today Show.
For more information and to learn more about the groundbreaking research going on, please go to wwwReverseRett.org.
Eagerly waiting for the treatment so my daughter can be improve her life just waiting n waiting......................
Posted by: rekha sharma | 12/23/2015 at 09:15 AM
Would be WONDERFUL!!!
Posted by: Jeannie Miles | 12/23/2015 at 08:39 AM