NF2 Research and Media News 2010

Dec 30, 2010: ‘NF2 News’ winter 2010 newsletter by the NFA, in the UK. – Interesting opening article on the NFA’s new 5 year plan. Also, a very interesting article on Avastin™ for NF2, page 7.

Dec 1, 2010: CTF announces a Phase 2 of the DDI ‘NF Preclinical Consortium’ (NFPC). Funding (at $1/4M each per yr) is available for UP TO five centers representing NF1 tumors and UP TO two representing NF2 tumors.

Nov 14, 2010: CTF announces a call for Letters of Intent for the new NF Clinical Research Awards of up to $100,000.

Oct 30, 2010: CTF 2011 Strategic Plan: Request for Ideas. Please complete this short Request-For-Ideas (RFI) on NF, and return to CTF by Dec 20, 2010. “In 2011, CTF is revisiting the 2006 Strategic Plan to i) evaluate progress as well as identify remaining barriers; and ii) define a 2011 Strategic Plan that will drive CTF’s research and clinical programs over the next five years. Once again we are reaching out to the NF community for input in this process. NOTE: This RFI is not a solicitation for funding applications. It is a request for ideas and suggestions that will be used to help CTF determine what funding mechanisms we might support in the future.”

Oct 24, 2010: 2010 NF Symposium held in Boston, MA, USA. Hosted by the CNfAD.

Oct 22, 2010: Dr. Roland to Receive 2010 Wholeness of Life Award at CTF Ceremony on October 28.

Oct 20, 2010: A synopses of Dr. Vijaya Ramesh’s presents Understanding the Meningioma and Schwannoma Growth in NF2 at the NF Midwest 2010 Symposium in Chicago.

Oct 19, 2010: A Phase 2 Study of Nilotinib in Growing Vestibular Schwannomas. In Canada. Identifier: NCT01201538

Oct 16, 2010: NF Midwest 2010 Symposium held in Chicago, IL, USA.

Oct 13, 2010: New NF2 Avastin phase II Trial to Open at Johns Hopkins, MGH and NIH. For NF2ers over 12y/o and up. Identifier: NCT01207687.

Oct 8-10, 2010: Ohio Gathering 2010, Dr. Welling and Dr. Newton will be speaking on NF2, held in Columbus, OH.

Sept 29, 2010: NIH Announces Five Botanical Research Centers.

Sept 17, 2010: Raising money for genetic-disorder research – Glen Ellyn resident Sally Richards is working to raise money to benefit research for a genetic disorder she has lived with for 25 years….

Aug 31, 2010: UCF Scientist, Child Advocate Lands More Than $2 Million in NIH Grants. – Associate Professor Cristina Fernandez-Valle works with more than a dozen students in her lab searching for a treatment or cure to Neurofibromatosis type 2.

Aug 25, 2010: FDA Funds Could Support Neurofibromatosis Clinical Trials. 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. Next application deadline is February 2, 2011.

Aug 21, 2010: The Children’s Tumor Foundation (CTF) announced the 2010 YIA Recipients. Two out of the six awardees were for NF2.

Aug 18, 2010: NEW! The Children’s Tumor Foundation (CTF) announce a call for Letters of Intent for Clinical Research Awards of up to $100,000. Deadline 9/15.

Aug 13, 2010: Olivia Hernandez’s Fundraising Page – Never Give Up! – Its that time of year again, time for the NF Endurance Team to hit the Long Beach Marathon! I am back this year as a Team Captain, and need your help to reach my goal of raising $5000 for CTF’s NF science and research programs.

July 28, 2010: Advocure NF2, Inc is now on Facebook! Help support our Cause.

July 28, 2010: Help Stop NF2 is a 501(c)(3) public charity founded by Harley and Rebecca Dufek in 2009.

July 14, 2010: Phase II Trial of Bevacizumab in Patients With Recurrent or Progressive Meningiomas. Identifier: NCT01125046.

July 14, 2010: Novartis Shifts Focus to Rare Diseases. – CEO Vasella Sees Value in Niche Drugs That Can Have Broader Uses.

July 14, 2010: Pfizer Deal Signals Move Into Rare Diseases. – The world’s largest drug company is thinking small.

July 14, 2010: FDA Database Aims to Spark Orphan-Disease Drug Development. – For months now, the Food and Drug Administration has been trying novel ways of encouraging drug makers to develop drugs for rare diseases……

July 14, 2010: NF2 Patients Needed for New Vestibular Study at MEEI. Harvard Medical School / Massachusetts Eye and Ear Infirmary Boston MA. Adrian Priesol, M.D. The general clinical goal for our study is to quantify motion perception for a range of vestibular disorders. A long-term goal is to develop new clinical tests to provide early diagnosis for vestibular disorders. These clinical research efforts are part of a broader basic science investigation of vestibular thresholds. At this time, we are seeking NF2 patients who have complete loss of vestibular (i.e., “balance/equilibrium organ”) function in both ears following surgical removal of tumors from both ears. Travel reimbursement would be paid for all qualifying volunteers.

July 11, 2010: First Annual South Jersey Ride4NF Poker Run/Benefit. All proceeds from this ride and benefit will go to research funding to help find a cure for NF.

June 22, 2010: Do You Have NF2, and Have Used Avastin? Please Take CTF’s Survey. – “The Children’s Tumor Foundation (CTF) is conducting an ANONYMOUS informal NF2 Survey to accumulate as much information as we can about the broader use of Avastin by NF2 patients and the impact of this drug on NF2 tumor growth/hearing/etc. If you have NF2 and have taken Avastin, either in the context of a clinical trial, or individually, we invite you to take our brief survey.

June 13, 2010: CTF Blog highlights of the recent 2010 NF Conference in Baltimore.

June 11, 2010: CTF Blog highlights of HEI’s recent 2010 NF2 Meeting in Las Vegas.

June 5-10, 2010: 2010 NF Conference Back to the Future, held in Baltimore, MD, USA. Hosted by the Children’s Tumor Foundation (CTF).

May 24, 2010: PubMed, What’s New in Neurofibromatosis? Proceedings From The 2009 NF Conference: New Frontiers. – a full review.

May 24, 2010: PubMed, Neurofibromatosis type 2 (NF2): A clinical and molecular review. – Corresponding author: D Gareth R Evans.

May 2-4, 2010: NF2 Meeting: The State of the Art, held in Las Vegas, NV, USA. Sponsored by House Ear Institute (HEI).

May 2, 2010: The Second Annual “Ben”efit for NF2. Proceeds to benefit the Children’s Tumor Foundation’s (CTF) DDI NF Preclinical Consortium.

April 2010: True Life | I Have NF, full episode on MTV. Bekah, 19 years old with NF2 from Illinois.

March 2010: Climb Kilimanjaro for NF2! Trek to the Roof of Africa on 10/10/10 and Help Raise Awareness for NF2.

March 2010: CNFAD’s 2008 Conference Transcript, Why We Do Research and Where We Are, Presented by: James Gusella, PhD.

February 25, 201: The Children’s Tumor Foundation is currently planning the implementation of both an NF patient registry and NF tissue biobank “which we aim to launch in 2010. In January, the Children’s Tumor Foundation will join with a number of other Foundations in an NIH-led meeting to plan for a collaborative patient registry that includes multiple diseases“.

February 25, 2010: YouTube, Neurofibromatosis Type II – Marco Giovannini, M.D., Ph.D. – Dr. Giovannini discusses neurofibromatosis type II, aka “NF2”, and the research underway in his lab at the non-profit House Ear Insitute. The lab is studying the nature of this life-threatening genetic disease with the goal of developing better treatment options for NF2.

February 19, 2010: Merlin/NF2 Suppresses Tumorigenesis by Inhibiting the E3 Ubiquitin Ligase CRL4DCAF1 in the Nucleus. Merlin/NF2 Suppresses Tumorigenesis by Inhibiting the E3 Ubiquitin Ligase CRL4DCAF1 in the Nucleus. Wei Li, Marco Giovannini, C. Oliver Hanemann, Filippo G. Giancotti et al.

February 9, 2010: Youtube –  Neurofibromatosis type 2~NF2 Awareness  “Please help us raise awareness for finding a cure for Nf2.”

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