ja_mageia

(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.

Regards,

Garrett Gleeson, Communications Director
Children's Tumor Foundation

A documentary on a young woman facing the challenges NF presents in her life. 

The following was written by Dr. Kim Hunter-Schaedle.

There are many reputable medical research foundations but the Children’s Tumor Foundation sets itself apart with our commitment to fiscal responsibility and transparency.  As a recipient of Charity Navigator’s four-star (highest) rating we have demonstrated that a dollar invested in the Foundation is a dollar well spent.  Whether you are interested in helping to treat learning disabilities, deafness, blindness, scoliosis, bone deformities, cancer or any of the other complications of NF, here are five reasons to fund medical research through the Children’s Tumor Foundation:

1. More of your money gets to the researcher: if you make a donation to a university, hospital or other institution, you may feel that this is the best way to make sure your donation gets directly to the researcher of your choice. However, many universities, hospitals and institutions hold back as much as two-thirds of your donation in ‘indirect,’ ‘overhead’ or ‘administrative costs,’ because this is the amount of ‘indirect’ costs that the institution can claim from National Institutes of Health grants – the gold standard. So from a donated grant of $100,000, it is possible the researcher will see only $30,000.
   In contrast, CTF caps universities at 10% maximum overheads on our grants. So from a $100,000 grant, the researcher will see $90,000. To date we have not had an institution decline a grant because of this. 

2. Funding the best research, wherever it is: Many people feel inclined to keep their funding local and/or feel attached to a specific researcher at a specific institution. But how do you know that researcher is at the cutting edge of the field? The answer is in most cases you wont know.
   An investment in the Children’s Tumor Foundation is an investment in the very best science in the world wherever it may be.  All CTF funded programs are open to applicants worldwide. We fund only the top tier applications recommended by our Research Advisory Board which is comprised of international experts on neurofibromatosis, cancer and related research areas.

3. Be part of a pipeline, and put funding where it is most needed today: If you donate funds directly to researcher or institution, how do you know that their work is not currently being duplicated elsewhere in the world and funded by someone else?
   The Foundation conducts ongoing ‘landscape monitoring’ to determine which areas of research are being funded at any one time. This information informs our strategic planning to determine the areas of research most in need of funding in order to accelerate new discoveries to clinical therapies.

4. Oversight and accountability: If you donate funds directly to a researcher or institution, how and by whom is progress monitored? Can you guarantee the feedback you will receive?
   All research funded by the Foundation is monitored through ongoing progress reporting and follow-up even after our funding has expired– for example, our awardees success in securing follow-on funding. This information allows us to monitor the long-term impact of CTF funding, and to integrate that information back into the neurofibromatosis landscape to inform future decision making on funding directions to take.

5. Ensure discoveries move forward: If you donate funds directly to a researcher or institution, and a discovery is made leading to a patent, how can you be sure it will be advanced for the purposes for which you’ve funded rather than a potentially more lucrative purpose?
   Recipients of Children’s Tumor Foundation funding are required to sign a CTF Patent Policy.  This provides the Foundation the opportunity to have a ‘seat at the table’ when decisions are made at the institution about patenting and licensing a discovery; rights for CTF to claim back the discovery or patent if it offers promise for patients but the institution does not advance it; and, if the discovery becomes a commercial success, a share in the revenue stream for the Foundation to plow back into other research projects.

If you have any questions about any of the information provided in this space please fee free to ask below or email us at info@ctf.org. 

This blog entry was written by Dr. Kim Hunter-Schaedle and posted by Garrett Gleeson.

The upcoming 2010 NF Conference features a packed program of scientific and clinical presentations, but perhaps the most anticipated will be the opening session, chaired by Dr. Roger Packer (Children’s National Medical Center) and Dr. Kathryn North (University of Sydney). The session will feature updates on a number of major ongoing neurofibromatosis clinical trials (though such is their number that updates on additional trials will be reported later in the Conference). The NF community now has a number of NF1 clinical trials underway including trials for plexiform neurofibromas learning disabilities and next, optic pathway glioma, and these continue to expand; Dr. Brigitte Widemann (National Cancer Institute) will review ‘lessons learned’ in these past few years of implementing NF1 trials. NF2 clinical trials have also commenced with an initial focus on the key tumor, vestibular schwannoma; these will be presented, and Dr. Bradley Welling (Ohio State University) will give a reprise of the Foundation’s recent Las Vegas ‘State of the Trial’ Workshop including plans to update the consensus guidelines for how NF2 trials should be conducted.    Dr. Jay Gibbs (AstraZeneca, and also Chair of the CTF NF Preclinical Consortium Oversight Committee) will offer a perspective on potential next-in-line drug candidates for NF trials.

Also well represented on the 2010 agenda are advances in the resources that clinicians need to give patients the best possible clinical care.  Prior to the NF Conference, CTF staff will host a networking forum for NF clinic coordinators – often the first and most prominent point of contacts for patients visiting and NF clinic. And three-dimensional imaging of tumors is gradually becoming integrated into clinical care as well as clinical trials; advances in this area will be presented at the NF Conference. And an entire evening of the Conference hosted by Dr. Ros Ferner (Guy’s and St. Thomas’ NHS Trust, London) and Dr. Bob Listernick (Northwestern University)  will be dedicated to a ‘clinical care satellite’ where physicians will share wisdom on clinical management approaches and on challenging cases of NF that they have managed.

This blog entry was written by Dr. Kim Hunter-Schaedle and posted by Garrett Gleeson.

In just under a week’s time, the Children’s Tumor Foundation 2010 NF Conference kicks off in Baltimore. This year should see an attendance of close to 300 clinicians and scientists from around the world convening to share the latest developments in their neurofibromatosis research. The meeting is not open to the lay community, but through this blog and a series of short filmed interviews from the conference floor, our staff will keep you up to date on all the exciting research reported. 

This year’s NF Conference theme Back to the Future will celebrate the significant progress we have made in NF research in the past few years, but also focus in on the challenges that remain. The progress made in NF research has been impressive. Looking back, at the 2005 NF Conference, there were no talks on clinical trials. In 2010, we have an entire afternoon focused on the major ongoing clinical trials, with additional clinical trials presented throughout the meeting.  The same is true of preclinical drug testing – almost absent from the agenda just a few years ago – which now percolates through the entire meeting.  CTF has contributed to this progress, through the past few years’ implementation of our 2006 ‘Strategic Plan to Accelerate Neurofibromatosis Research to the Clinic.’ Miraculously, by the end of 2010 we should have set all five areas in motion, including: funding preclinical drug testing (ongoing through our Drug Discovery Initiative Awards since 2006 and NF Preclinical Consortium since 2008); establishing an NF Clinic Network (established 2007, now 42 clinics and growing); funding pilot clinical trials (to date two have been funded); establishing a Neurofibromatosis Patient Registry and BioBank (to launch in 2010) and identifying new NF biomarkers (ongoing through our various funding awards and to be expanded via the Biobank). Of course we never forget the value of ‘discovery’ research, and this year includes many presentations from junior investigators (many funded through CTF’s Young Investigator Award program), all the way up to the thought leaders in the field (many of whom were at one time YIA recipients!).

Follow the blog over the coming week for 2010 NF Conference previews, and of course for ‘live’ updates during the meeting itself!