According to Thomas Fuller, “An invincible determination can accomplish almost anything and in this lies the great distinction between great men and little men.” Well, today, Daily BR!NK is proud to feature two great women whose passion and relentlessness in fighting a disorder of the nervous system known as Rett Syndrome (something we, at Daily BR!NK, had never heard about prior to these interviews) are nothing short of extraordinary. When Monica Coenraads’ daughter Chelsea was diagnosed with Rett Syndrome, her passion and can-do attitude led to the foundation of the Rett Syndrome Research Foundation and the subsequent creation of the Rett Syndrome Research Trust (RSRT). Over the years, she has developed a strong network and witnessed groundbreaking advancements which catapulted Rett Syndrome to a high-profile disorder within the scientific community — all of it for the love of her daughter. Monica’s interview is followed by a discussion with Romanian top supermodel Linda Taylor and Professional Advisory Council at the RSRT, whose role in spreading the world is primordial for a disorder still relatively unknown to the public.
What were your original career plans?
I originally got an MBA from the University of Connecticut in international business. Shortly after graduating, I met my husband and ended up running the family restaurant that my father had bought but couldn’t run due to illness. After ten years, I knew that the restaurant business did not lend itself to family life, so I sold it and had my first daughter, Chelsea.
Tell me about Chelsea. How long after her birth in 1996 did you realize that there was something different about her?
Everything seemed fine at first, but we had a nagging feeling around her first birthday that things were stagnating rather than evolving in her development. The disease does not show up right away, much like autism. She was officially diagnosed in October, 1998.
For our readers not familiar with it, what is Rett Syndrome?
It is a very debilitating childhood neurological disorder that affects girls almost exclusively. The child is typically normal during the first year of life, but somewhere around six to eighteen months, she will start to undergo a regression: lose motors skills she already has, like going up the stairs; the ability to walk; or language. Most children with Rett Syndrome do not speak at all; hallmark symptoms include a loss of hand use, which is replaced by repetitive movement. It’s like the child is washing her hands constantly, sometimes every waking moment. They need help with every basic aspect of daily living, including going to the bathroom and feeding..
Are all children hit the same way with Rett Syndrome?
No. It is a spectrum disorder, so some children are more highly functioning than others… but even those whose symptoms are less severe need help with every aspect of daily living. My daughter was hit hard: she’s fourteen and in a wheelchair, and she cannot use her hands. She has no language. She has a severe seizure disorder and has orthopedic issues — scoliosis, contractures. She has gastrointestinal problems and [is fed through] a feeding tube.
How many individuals have Rett Syndrome?
Statistically, it affects one in 10,000 girls. There are approximately 15,000 girls with Rett Syndrome in the United States and about 350,000 worldwide. To give you an idea, it’s pretty much the same prevalence as Huntington’s Disease or ALS.
As a mother coming across this terrible syndrome, who did you turn to and what resources were available?
Once Chelsea was diagnosed, I started to do my homework: what did scientists know about Rett Syndrome? More importantly, who was working on trying to find the cause? There was a parent support group that had been around for fifteen years at that point, but they were not focused on research. There was a clear need for an organization to fill that gap. From October 1999 to August 2007, I was the co-founder and research director of the Rett Syndrome Research Foundation, whose role is to raise funds and allocate those funds as efficiently and effectively as possible. We wanted to market Rett Syndrome to the scientific community, and we’ve come so far since 1999.
Was Rett Syndrome not a big deal in the scientific community at this point?
It really wasn’t. But it’s a different scenario now; it may surprise you, but Rett Syndrome is a high-profile disease in scientific circles. Part of the reason is the interesting nature of the gene that causes Rett when it’s mutated.
What is your role within the organization?
What I bring to the table is the ability to network. I bring scientists to the Rett field and facilitate collaborations. I’m able to do that because I am passionate about the science. When I started, I knew very little about science. Fast-forward twelve years and I’ve become very familiar with the neuroscience community.
How did you go about making a name for yourself?
It started with one phone call at a time. I learned from organizations for other diseases that were doing a good job, and I learned a great deal from them. I also learned from the scientists themselves, like Adrian Bird, who published a landmark scientific paper in February 2007 that demonstrated the first global reversal of symptoms in pre-clinical models of the disorder (read more about it here). It catapulted our level of awareness and research. With the help of an animal model, Adrian and others have taught us an incredible amount about the disease.
What is the single most impressive fact you have come across over the past few years?
Rett Syndrome is a woman’s disorder. If you removed breast cancer and reproductive organ cancers, you would be left with a couple of disorders that only affect women, Rett Syndrome being the most prevalent.
What keeps you going?
I look into my daughter’s eyes, and I know she is trapped inside her body. She has feelings, wants, desires, and I’m trying to get her out of her prison. This passion for the research and the belief that I have in every fiber of my body — that a cure can be found — keeps me going. My philosophy has always been to turn lemons into lemonade and grab every opportunity that comes my way. I wasn’t planning on going into the restaurant business, nor was I expecting to spend the last fourteen years battling Rett Syndrome.
How can Daily BR!NK readers contribute to your success, or to that of the organization?
We’re always looking for donations. Look up an event you’d like to attend on our site and/or provide an auction item.
First and foremost, you seem to be a sort of modern Wonder Woman. How would you define exactly who Linda Taylor is and what she does? Did you always want to become a model?
Oh, gosh — I take that “Wonder Woman” as a compliment! Thank you, but first and foremost, I am simply another human being just like you and others here who try their best to do their part to contribute to a better world, safer environment, healthier or happier life. No, I never knew I would become a model until I became one. Not that I wanted to, but probably because I was meant to. Mother Nature ‘wanted’ me to… the rest is just a whole wonderful journey that I’m still on.
When was the first time you heard about Rett Syndrome, and what struck a chord with you?
I knew nothing about this devastating syndrome until summer of 2010, when my business partner, Jason Rem (director of the film Rett: There Is Hope), brought the issue to me as a “problem” and also as a matter of, “what can we do about it? How can we help?” We started to work on finding a solution, first by making a documentary and spreading the word around. Then, I personally became more and more involved with RSRT (Rett Syndrome Research Trust), doing all that I could to reach out to a larger audience and working on a mission to reverse Rett Syndrome. Of course, the moment that really ‘struck’ me was the first time I met Heidi and Jonathan Epstein and their little girl, Hannah, who was diagnosed with Rett when she was 15 months old. That was the moment that I knew… I just knew that there would be no peace in me until I put a stop to this syndrome.
Tell us about your involvement from a practical standpoint. What are your responsibilities?
Besides working with Rem Entertainment as a producer, I am the Professional Advisory Council at RSRT, working on the campaign to raise awareness about Rett by spreading the word around, reaching out to the media, and putting together fundraising events.
Here’s what I find remarkable about you: lots of international stars such as yourself join charities and causes for their image, but you are genuinely attached to your cause. How did your childhood in Romania influence your involvement in the nonprofit world?
I was raised in Romania in the Communist era, where I often saw lots of poor families and sickness, too. I grew up with a knowledge that there can be illness around us, but that at the same time, we can make a difference and see these situations solved — that is where my heart is, still. Each one of us can make a difference — in anything! Helping, supporting, and loving each other is all that it takes. You might be surprised, but miracles do occur when that happens. To this day, I haven’t yet encountered a situation I could not face and solve.
How do you foresee the Rett Syndrome Research Institute evolving in the next few years?
Our goal is to bring funds to the research table so that scientists can work on human Rett Syndrome reversal. In 2007, we actually found that a reversal on a male mouse model of Rett Syndrome was possible! (See the astonishing news made by Dr. Adrian Bird, in Science Magazine here.) That is our hope. And that is what RSRT is working on right now.
Let’s talk about your career. What is the best part about being an internationally renowned supermodel and what is the most challenging aspect of the job?
A modeling career can only take you so far. I have accomplished that journey very well, for which I couldn’t be more grateful to the universe and everyone who made it possible for me over the years to remain grounded. However, nothing is too challenging when working with great people, great minds, and great souls, and above all, with beauty. Everything else becomes part of your world, and I know that my world is part of the people’s world, too, and that has been always a blessing.
How can our readers contribute to your success and that of the organization?
Please do visit our RSRT website page at www.rsrt.org and stay informed. Spread the word around. Call us. Take action. Take part. Get involved. Donate. Whatever you do, your contribution, your support, your love and care are going to change and save the lives of thousands and thousands of innocent little girls affected by this devastating syndrome.