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An Open Letter to Oprah Re: Neurofibromatosis

By August 2, 2010December 5th, 2023Awareness

(8/2/2010) 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.


Garrett Gleeson, Communications Director
Children’s Tumor Foundation