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Following on from the promising results that have emerged to date from bevacizumab (Avastin) for the treatment of tumor growth and resulting hearing loss in NF2, a new Avastin NF2 trial will open shortly. The trial aims to improve hearing and decrease the size of vestibular tumors and is being opened on October 18, 2010. This study is a collaboration between Johns Hopkins Hospital (serving as the primary coordinating site), Massachusetts General Hospital and the National Cancer Institute. People with NF2 who are 12 years of age or older and who have recently experiences hearing loss due to their vestibular tumors may be eligible for this study. People with NF2 who have worsening hearing in their only hearing ear are considered particularly appropriate study candidates. If you are interested in participating in this study or learning more about it, please contact Amanda Bergner in the Central Study Office at Johns Hopkins at 410-502-6732 or abergne1@jhmi.edu.

Facial paralysis can be a concern for many persons living with NF2. Though not often top of the list of clinical issues for the care provider, who is principally focused on managing NF2 tumors, facial paralysis can cause a number of issues such as the inability to smile on the affected side of the face. Now a team from Massachusetts General Hospital has presented exciting results restoring the ability of individuals with NF2 to smile following muscle implant surgery and follow up physiotherapy.  The MGH team is headed by Dr. Tessa Hadlock and includes Dr. Scott Plotkin who directs the CTF NF Clinic Network Affiliate Clinic at MGH. 

In NF2, facial paralysis occurs if vestibular schwannoma tumor growth pressing on the facial nerve (which lies close by the vestibular nerve on which the tumor grows), or if the facial nerve is damaged at the time of vestibular schwannoma surgery. In the MGH study, five patients were treated between 2006 and 2009, aged 13-50, with a single stage free gracilis muscle transfer for smile reanimation. The result was a significant increase in the ability to smile. Management of facial paralysis is often overlooked when defining a care plan for NF2 patients that typically have multiple brain and spine tumors. However the loss of facial expression can have great psychological and social impact on the individual with NF2, and this new technique offers the first hope that it may be reversed.  The preliminary findings are reported in the journal Laryngoscope.
Vakharia K, Henstrom D, Plotkin SR, Cheney M, Hadlock TA. (2010) Facial Reanimation of Patients with Neurofibromatosis Type 2. Laryngoscope.Oct;120(S3):S108.

The National Institutes of Health have announced a potential commitment of up to $50 million OVER 5 YEARS to form a Tumor Microenvironment Network (TMEN). This U54 opportunity proposes to assemble up to TWELVE Centers to 1) generate a comprehensive understanding of composition of the stroma in normal tissues as well as its roles in tumor initiation, progression, and metastasis; 2) delineate mechanisms of tumor-stroma interactions in human cancer; and 3) identify the mechanism(s) by which tumor stroma may affect responses to treatment. Primary brain tumors are of interest as well as peripheral nervous system tumors. The program is co-funded by National Cancer Institute and National institute for Neurological Disorders and Stroke. An applicant may request a project period of up to 5 years and a budget up to $700,000 per year (direct costs).

Given the established role of the microenvironment in NF tumors, this program offers a terrific opportunity for neurofibromatosis research centers to apply. Letters of Intent are due December 20, 2010 and if invited full applications by January 20, 2011.  Anticipated earliest start date of funding: September 2011. For more information click here.  (Request for Applications RFA-CA-021).

Dr. Marco Giovannini, director of the Children's Tumor Foundation NF Preclinical Consortium Center at House Ear Institute, talks about NF2 and the Foundation sponsored research being advanced in his lab.

New Food and Drug Administration funding could provide an opportunity for neurofibromatosis clinical trial applications to be supported. FDA Orphan Products Development Grants support the clinical development of products for use in rare diseases or conditions for which no current therapy exists or when the proposed product would be superior to the existing therapy. This would include neurofibromatosis, and the Children's Tumor Foundation encourages NF researchers to apply. Phase 1 clinical trials are eligible for grants of up to $200,000 per year for up to 3 years. Phase 2 and 3 clinical trials are eligible for grants up to $400,000 per year for 4 years. Dollar caps represent ALL costs (i.e. direct plus indirect). 

Next application deadline is February 2, 2011. Questions: contact Katherine Needleman at Katherine.needleman@fda.hhs.gov or 301-796-8660. To read the request for applications click here.