An Open Letter to Oprah

This post by Garrett Gleeson was originally posted on the Foundation blog.

On Thursday, May 6, Oprah aired a segment on Ana Rodarte, a young woman who lives with neurofibromatosis.  Despite misleading information and multiple factual inaccuracies (click here to see the thoughts we shared following the airing of that program) the segment is being re-aired today. Following the program we repeatedly emailed members of Oprah’s staff, and Oprah herself, the below letter.  We received no reply.  Please share this via Facebook, Twitter and email and help us spread accurate information on behalf of those who live with the disorder and their families.

Dear [Oprah Staff]:

I’m writing in response to a segment Oprah aired several weeks ago that misrepresented the disorder my Foundation works to cure—neurofibromatosis (NF). I also write on behalf of eight women who go above and beyond in advocating for their children.  These are women who would certainly champion their children regardless of their condition but, because of NF, do even more than parents of unaffected children.  They spend countless hours raising funds and awareness so that other people will understand the challenges their children face and so that, someday, their children will enjoy the benefits of treatments for the various manifestations of NF.

Two weeks ago you had a young woman on your program by the name of Ana Rodarte.  Ms. Rodarte is a brave young woman and the challenges she faces due to NF make for an inspiring story.  However the segment misrepresented NF multiple times and set back much of the awareness efforts these women have spent so much time engineering.  I wanted to share these women’s stories with you because you can help bring a proper understanding of NF to the public.

Below are several quotes from letters they’ve shared.  If you’d like to see the full letters please let me know, they are inspirations to me and I’m sure you will share the same feeling.

On their children’s diagnosis:

“I immediately took to the internet.   What I learned was terrifying.  Tumors.  Learning disorders.  Bone disorders.  Early onset of puberty.  Higher likelihood of malignancies.  And this was just the start of the list.  At some point as I stared at my computer, I know I started to cry.”

“There were plenty of graphic pictures to offer this mother and they were all I could see while I watched my baby sleep. When I saw those first words associated with Neurofibromatosis – The Children’s Tumor Foundation, those words nearly destroyed me. I sat at my computer, alone, and learned that those bumps all over my son were tumors and that there was no treatment and no cure. This only happens to other people, not MY son. Then the most devastating words my eyes have ever seen:  There is No Treatment and No Cure for NF.”

On what they do to battle NF:

“In 2008, we held our first Gala. We have tried many other fundraisers in the past; garage sales, super bowl parties, motorcycle rides, music festivals – but this Gala would be different. Instead of $25 tickets, the tickets were $125. I was so anxious…what did I know about events like this? But, just like the marathon, I did it anyway. Our first year we raised $38,000 and our second year about the same.”

“There isn’t a day that passes that we don’t grieve our daughters diagnosis. We decided 18 months ago to begin to fight for our daughter and her future by fundraising. To date our team has raised $85,000 all donated to The Children’s Tumor Foundation, all being used to research drugs that are critical to ensure our daughters future health. We are determined to make a difference to improve the quality of our daughter’s and everyone that has NF.”

On the effect the program featuring Ana Rodarte had on them:

“I initially felt as if my efforts were in vein after seeing the 20 minutes that was spent on this segment. There was an absolute effect. I received at least 25 calls that evening with people and family concerned after watching the show that were left wondering if there was something we were not telling them. I have since realized my efforts will never be in vein. First and foremost I am my son’s mom and his advocate. He in turn is my personal inspiration. My efforts have been and will continue to be for him and all those affected by NF. I am an NF mom who rocks and I say that with an enormous amount of pride and responsibility.”

“Contrary to Dr. Batra, the plastic surgeon who appeared on your show, half of all cases arise in families (like mine) with no history of the disorder.  Anyone’s next child could be born with NF.  As much as I truly appreciate the fact that you brought attention to NF, the inaccuracies cast during your show sets our cause back – a cause that needs much attention, awareness and support.”
I would very much like to share these letters with you and hope that you might consider sharing their stories on Oprah.  These incredible women wish only for the story of NF to be told truthfully so that they can go on fighting the battle against it.  I hope that you will contact me at this address or the number listed below so that we may go about helping them in their battle. Thank you for your time.

Regards,

Garrett Gleeson, Communications Director
Children’s Tumor Foundation

It’s gO Time — Meet Lesley O

Lesley Oslica knows first hand the uncertainty that NF brings as her daughter Katie has NF1. Lesley and her entire family participate on the NF Endurance Team. From biking across America to rallying runners in Little Rock, the Oslica’s work hard to spread awareness about NF. In 2010 Lesley served as team captain for two events in the Rock ‘n’ Roll Mardi Gras Marathon and the Little Rock Marathon.

Meet Lesley

Lesley and Connie Oslica participate in multiple NF Endurance Events each year in support of their daughter Katie.

How many races you have done? 11 half marathons, 4 full marathons, and coached at seven NFET events.

What is your race mantra? If the kids have to endure living with NF, I can endure to the finish line; run/walk/crawl…whatever it takes!

Favorite postrun meal: Pizza and some bubbly liquid carb replacements

What does Endurance mean to you? Endurance…just as Webster’s might say…the ability to continue despite adverse conditions; bearing pain, hardships. The true witness of endurance is seen in so many of the heroes living with NF. Kids enduring chemo, parents enduring watching their child suffer through every MRI, blood tests, wearing back braces, surgeries, rehab, etc. And, the ultimate endurance…people with NF facing the end of their journey with bravery and determination, to leave a legacy for those who come behind them. They endure – and leave a permanent impression on our hearts. The compassionate people on the NF Endurance Team endure different struggles…blisters, fatigue, muscle cramps, torn muscles, tendons, etc. But, we endure so that all those who suffer with NF might have a brighter future. If we can’t do the research, we can hopefully at least fund it and raise awareness of NF to help gain support.

What is on your must do race list? If I have one thing on my must do list…it would be to get a team together for RAAM so that my husband could ride RAAM (and me be a crew member). Participating in RAAM in any capacity was an incredible experience. I don’t know if it’s the sleep deprivation or witnessing our riders hammering those pedals for over 3,000 miles (or a combo of both)…but whatever the case, RAAM is truly representative of Endurance! If we are talking race as in marathons, NYC [Marathon] is one that I’m going to have to experience one of these days; the crowd, the city, the other runners…I can’t imagine the feeling of being a part of something so big.

Thoughts on Oprah

On Thursday, May 6, Oprah did a segment on Ana Rodarte, a young woman who lives with neurofibromatosis.  Below the Foundation shares thoughts on the segment:

As May is NF Awareness Month, we were excited to learn that the Oprah show was using its platform to advance awareness of NF.  After watching the program we were disappointed that the segment “Overcoming Obstacles” featuring Ana Rodarte, did not accurately portray the disorder.

Both Oprah and Ana incorrectly focused on the “Elephant’s Man Disease,” stating this term is “offensive to those living with NF.”  It is important to understand that Joseph Merrick, a man who was unfortunately derogatively referred to as the “Elephant Man,” did not actually have neurofibromatosis.  Instead, Merrick had a genetic condition causing the overgrowth of some parts of his body known as Proteus syndrome.  It is unfortunate that this inaccuracy was such a central focus of the show.  Proteus syndrome affects people in a different way and is in no way the same as NF.

Further, it is important to remember that Ana’s situation is rare and represents a severe example of NF type 1.  In reality, most people living with NF do not experience the degree of deformity Ana lives with on a daily basis and never will.  If you are a parent dealing with a new diagnosis of your child, please understand that Ana is an extreme situation.  In fact, many children living with NF look no different than their peers and will never face the ridicule that Ana shares in her story.  It is also worth noting that children born with NF in the United States will receive a much higher quality of care than was avaliable to Ana in her youth, and severe cases like hers will benefit from earlier intervention and enhanced surgical techniques available here.

It is also important to understand that neurofibromatosis is not always inherited from a parent.  When asked about the genetics of NF, Dr. Batra (a plastic surgeon) provided inaccurate information.  To clarify, many people living with NF are the only people in their families affected.  NF is caused by a change in a specific gene.  This gene change can sometimes be inherited by a parent, or it can just happen by chance with no reason.  For those who live with NF, they have a 50% chance to pass the NF onto a child.  Ana shares she “doesn’t want to have children because she doesn’t want to pass on the disease.”  In reality, there are various reproductive options available to potential parents living with NF that ensure it is not passed down to any of their children.   A genetic counselor is an allied healthcare professional who is best equipped to discuss these issues with families who are concerned about passing NF on to a future child.

Lastly NF is not a disease, as it is repeatedly referred to in the program, NF is a disorder.  A person with a disease feels ill, whereas a person with a disorder may or may not experience medical problems.  People contract a disease, people are born with a disorder.

We appreciate Oprah’s efforts to demonstrate the incredible courage of the human spirit.   Ana is a great example of this, but the show did not accurately portray NF.  As Ana herself mentioned, she wanted to share her story to let people know there is “help” and we commend her for her bravery.  However, we hope that in the future Oprah will use her platform to more accurately portray the struggles of the many people who live with NF and the many different manifestations the disorder may have.