neurofibromatosis cafe

A place to talk about NF, have fun and share.

May is National NF Awareness Month!!!

Neurofibromatosis: New Research, Clinics Offer Hope


logo-default.jpgNewswise — After ten years and $217 million worth of “bench to bedside” research, there are signs of hope in the medical community and among the 1 in 3,000 individuals worldwide who have neurofibromatosis (NF), a serious neurological disorder that causes tumors to grow on nerve sheaths throughout the body, according to the Children’s Tumor Foundation (CTF). And, that is something to celebrate during May, 2007 which is National NF Awareness month.

“A confluence of clinical discoveries and national planning initiatives is coming together this year to help those with NF and their families,” said John Risner, President of CTF, the nation’s largest non-profit foundation that supports NF research and advocacy. “At the same time, NF research funding has been halved and is facing the threat of deeper cutbacks from the Congressionally Directed Medical Research Program (CDMRP), the major funding source for research and clinical trials for NF.”

Clinical advances are being propelled by two successful recent initiatives:1) NF clinical drug trials to date are being conducted by a new consortium of ten major teaching hospitals called the NF Clinical Trials Consortium. This effort, funded by the CDMRP, holds the promise of accelerating drug development; and 2) the formation of The Children’s Tumor Foundation NF Clinic Network (NFCN), which was established as a pilot program of four clinics in 2006 and is now being rolled out nationwide to provide optimal care at the local level. Standards of treatment, clinic operating guidelines and a patient database are all components of the network. Future plans include a centralized tissue repository to facilitate the study of NF biomarkers and to help identify new drug targets.

Funding Cutbacks, A Cause for Concern

nihlogo.jpgDespite these advances, a serious decline in federal funding is of great concern to the NF community. The CDMRP’s NF Research Program (NFRP) has dropped sharply from $25 million in 2005 to $10 million in 2007. While the National Institutes of Health (NIH) could potentially help continue some of these initiatives, they are also under budget pressure. 2007 is the fourth year in a row that the NIH budget hasn’t kept up with inflation, leading to a 13% drop in real dollars.

Past funding has developed a tremendous amount of knowledge about the basic science of NF. With the investment in the NF Clinical Trials Consortium, a pipeline for drug trials has been created. “It is unfortunate that now we are facing a decline in funding to push the trials through,” states Mr. Risner. “The NF community has worked with the federal government to create this wonderful infrastructure – we can’t afford to starve it now.”

What is NF?
nf1image.jpg Though NF is not well known to the public, it is more prevalent than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s Disease combined. Neurofibromatosis (NF) is the term for three genetic disorders: NF1, NF2 and Schwannomatosis. NF1 is characterized by tumors that grow on nerves anywhere in or on the body. NF1 can lead to blindness, disfigurement, bone defects, learning disabilities, cardiovascular problems and malignancy. NF2 causes brain and spinal tumors, affecting the nerves for hearing and balance, and can result in deafness, motor impairment and cataracts. Schwannomatosis causes nerve tumors associated with chronic pain. NF affects all races, ethnic groups and both sexes equally.

Clinical Research Advances
“There is a great deal of excitement about a national phase two clinical trial, unprecedented in scope for NF researchers, which will begin in 2007, and involves the drug rapamycin,” said Dr. Kim Hunter-Schaedle, Director of Research at CTF. The trial is being conducted through the newly created NF Clinical Trials Consortium.

The rapamycin trial holds promise in preventing the re-growth of large plexiform tumors after they have been removed by surgery. Rapamycin targets a signaling pathway gone awry inside tumor cells. The second trial is looking at how small doses of lovastatin may help children with learning disabilities, which affects over half of all NF1 patients.

Smaller NF clinical trials around the world are testing the use of lovastatin, sinvastatin and other statin drugs to treat NF1 related learning disabilities, and sorafenib (FDA approved for renal cell cancer) to treat peripheral nerve sheath tumors.

The Children’s Tumor Foundation annually provides over a dozen smaller Drug Discovery Initiative Awards (up to $25,000), which fund preclinical screening of NF therapies for in vitro or in vivo screening, and the Young Investigator Awards, which fund novel ideas in NF research with grants of up to $100,000.

NF Clinics Across the Nation

The Children’s Tumor Foundation’s NF Clinic Network was developed by their Clinical Care Advisory Board. Four clinics participated in the pilot program in 2006 – in Seattle, Los Angeles, St. Louis and Denver — and now the program is being rolled out nationwide. This spring, the Foundation expects to welcome five additional clinics that meet these guidelines, with more to be added throughout the year. Member clinics are eligible to apply for grants of $40,000 per year to support the salary for an NF clinic coordinator.

“Our hope is to have a network of clinics strategically located across the United States, to ensure optimal clinical care for all persons in the U.S. living with NF,” said Dr. Hunter-Schaedle. “As the network becomes established, we will continue to work with hospitals across the country to improve the clinical care and quality of life of those with NF.”

About the Children’s Tumor Foundation

The Children’s Tumor Foundation is the leading not-for-profit health organization dedicated to improving the health and well being of the 1 in 3,000 individuals living with neurofibromatosis by funding research to enable effective treatments and ultimately a cure for NF. For more information about the Children’s Tumor Foundation, please visit or call 212-344-6633.

(Reprinted from


May 9, 2007 - Posted by | CTF.ORG,, neurofibromatosis, News, NF1, Texas NF Foundation, Uncategorized


  1. Well I certainly hope they do not continue to cut funding!! Without proper financial support there is little hope of finding the cure that we all so desperately need. I am definitley doing to be writing to those people and letting them to know opinions on the matter. Maybe if someone in their family had NF they wouldnt feel so apt to cutting the funds. So frustrating!
    Happy NF Awareness Month Reggie!!

    Comment by Emily | May 10, 2007 | Reply

  2. Thank you Emily Happy NF Awareness Month to you Emily. Yes is sad that that would even think about doing that. You can bet your last dollor that if the ones that are making the cuts had someone in there life that suffer with NF you would not hear about cuts being made. They really don’t know that they are cutting. They have to be made aware of how affects us. They will understand when they see.

    Comment by Reggie Bibbs | May 10, 2007 | Reply

  3. I am assuming they do not realize just how serious NF is. Would they cut funds to finding the cure for cancer or AIDS? No way! And NF is just as serious and can be just as life threatening. And I think that they do not realize just how common NF is and they are all probably affected by it in some way and they may not even know it.

    I am enlisting the help of all of my family and friends to write letters to our representatives to gain that financial support back.

    Comment by Emily | May 10, 2007 | Reply

  4. Yes I agree. We must let them know. Its easy to cut when you don’t know. What kind of person would make such a cut knowing just how serious this disorder can be.

    Comment by Reggie Bibbs | May 10, 2007 | Reply

  5. I am heading a help program for about 100 of the most disadvantaged children in Bogotá, Colombia. (NIÑOS DE LA ESPERANZA, PROGRAMA LA FLORA, which translates:”Children with hope”) One of our boys seems to have NEUROFIBROMATOSIS, and I am very concerned. He is 71/2 years old. What steps can I take? I really do not know what to do, how to find oput if it FN, and how to help!!! Can you guide me??
    Thank you in advance, and in the name of Michael Mercado.
    Hildegard Otto

    Comment by HILDEGARD OTTO | April 7, 2008 | Reply

  6. Hope Yall get the funding

    Comment by Shelley | May 17, 2008 | Reply

  7. Hildegard,

    Welcome to the blog. My best to you in everything you are working on. If you want you can send a direct email to me. I will do what I can to find a hospital in your area. I know I can find some that can help find a location for you. Direct email is

    Comment by Reggie Bibbs | May 17, 2008 | Reply

  8. three years ago I started growing lumps on my skull since two of my cousins suffer from severe forms of NF 1 I am concern whether its not also NF1. I am 32 can one develop NF1 at this age.

    Comment by Watjizaiye Menjono | August 17, 2008 | Reply

  9. Hi Watjizaiye,

    Thank you for writing on my blog. I’m not sure I have an answer for you. If you email my directly I can forward your question to someone who can answer that question for you.

    Comment by Reggie Bibbs | August 18, 2008 | Reply

  10. For as long as I can remember I have had cauf au latte spots. As I got old I began to have more and more lumps. It is painful to look at my own body. I cry when I look in the mirror. I feel so alone most of the time. It is important to me to be able to see I am not alone.

    Comment by Shelby | November 23, 2008 | Reply

  11. Hello,

    diese Nachricht ist für Frau Hildegard Otto gedacht.

    Erinnern Sie sich an einen Urlaub in St. Englmar/Deutschland/Bayern Anfang der 70er Jahre? Wir haben einige Zeit Briefe gewechselt. Sind Sie diese Frau Hildegard Otto?

    Best regards from Germany

    Walter Heinrich

    Comment by Walter Heinrich | December 9, 2008 | Reply

  12. hi can someone please help me i don’t know were i can go to chat to people with nf im 34 years old and im relly finding it hard as i have know one going through what i am i live in oxfordshire

    Comment by matthew clarke | February 3, 2009 | Reply

  13. Hi Matthew,

    Yes there are a few places you can chat with others that have nf. has a chat area. I also have a chat area that we are still trying to meet up at the same time. Some we meet all at once and other times we are not so lucky. You can also join face book I have a place where we share thoughts. Let me know if this work. Hope to hear from you sometime.


    Comment by Reggie Bibbs | February 3, 2009 | Reply

  14. hi everyone
    my little brother aged 13 has nf1 and it makes me get soo angry and nearly cry everytime i see him! i hate the way other children bully him, he is always coming home from school with bruises and black eyes and can never remember what happens(memory loss) he has learning difficulties but not to the point where he can be accepted into a special school! In everyway he is just a normal teenage boy, and it sickns me that people can be soo cruel! does anyone else have bullying problems? and how can you deal with it?

    Comment by amy | February 24, 2009 | Reply

  15. Amy, I sorry for what your son, and yourself are going through. I do understand. It’s hard to say what to do about it. In my case I remember when it happen to me, I learned that when I let them know I was hurt by it, it would just make them do it more. The ones that are doing that to him, are the ones with the problem. Is there a someone at the school to talk to about what is going on?

    Comment by Reggie Bibbs | February 24, 2009 | Reply

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