Blog entries

Save the Date: 2012 NF Forum and NF Conference

Mary Vetting — Tue, 03 Jan 2012 15:20:59 +0100

Save the Date! The Children's Tumor Foundation's annual NF Forum will occur June 8-10, 2012 in New Orleans, LA. This year, for the first time, the Forum will be held adjacent to the NF Conference which is the world's largest gathering of NF researchers, doctors, scientists, and clinicians.

Here is a video from last year's NF Forum:

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Children's Tumor Foundation Receives Top Charity Rating for 3rd Year in a Row

Mary Vetting — Fri, 30 Dec 2011 19:15:38 +0100

The Children's Tumor Foundation is pleased to announce that it has been honored with a 4-star rating from Charity Navigator, America's largest and most-utilized independent evaluator of philanthropies. This is the 3rd year in a row that Charity Navigator has given the Foundation its highest ranking. Less than 10% of charities rated have received 4-stars for three consecutive years, which places the Foundation in prestigious company.

"Receiving four out of a possible four stars in...

Amazing Story of Young Man's Journey to Graduate

Endurance Admin — Tue, 27 Dec 2011 15:23:28 +0100

The story below, from the Detroit Free Press, highlights not only true grit and determination, but a community of compassion and spirit. Special thanks to Dan Gilbert and the Quicken Family of Companies for their role in this holiday triumph.

http://www.freep.com/article/20111224/NEWS01/112240368/Wayne-State-grad-s-dream-of-medical-school-becomes-a-reality?odyssey=mod|newswell|text|FRONTPAGE|s

Congressional Compromise Provides Funding for NF Research

Endurance Admin — Wed, 21 Dec 2011 23:07:10 +0100

House and Senate negotiators have agreed to include $12.8 million for NF research in
the 2012 Department of Defense budget. While this represents a cut from last year’s
funding level of $16 million, even more drastic reductions to NF research had been
feared.

George Orfanakos, President of the Children’s Tumor Foundation, praised NF
advocates for making their voices heard in Washington, particularly during the past two
months of budget negotiations....

Annette Bakker, Ph.D. Appointed Senior Vice President of Research and Drug Development

Endurance Admin — Tue, 20 Dec 2011 22:06:00 +0100

The Children’s Tumor Foundation has appointed Annette Bakker, Ph.D., to the newly-created position of Senior Vice President of Research and Drug Development. The Foundation is dedicated to improving the health of those affected by neurofibromatosis, more commonly referred to as NF, and is the largest non-governmental funder of NF research nationally.

Dr. Bakker is o...

Children’s Tumor Foundation Funds Two New Drug Discovery Initiative Awards, and Increases DDI ...

Mary Vetting — Wed, 14 Dec 2011 15:50:08 +0100

The Drug Discovery Initiative Awards program is focused on seed funding preclinical drug testing studies on neurofibromatosis in cell or animal models, and is one of the most successful Children’s Tumor Foundation programs to date. Since this program began in 2006, we have funded over 45 DDI Awards focused on preclinical testing of drug therapies for all aspects of NF1, NF2 and schwannomatosis, from learning disabilities to tumor growth to pain. This has been an investment for the Foundatio...

NIH Early Independence Awards - January 30th Deadline!

Mary Vetting — Wed, 30 Nov 2011 15:23:25 +0100

The National Institutes of Health has announced a funding opportunity for the NIH Director’s Early Independence Awards for junior investigators wishing to “skip the post-doc” and immediately begin independent research. Budgets may be up to $250,000 in direct costs per year for up to five years.

Eligible candidates must be within one year of receipt of a terminal research degree (Ph.D., etc.) or completion of clinical residency.

All areas of research rel...

Revisiting the Schwannomatosis Diagnosis - A Role for Vestibular Schwannomas?

Endurance Admin — Wed, 30 Nov 2011 15:03:30 +0100

Schwannomatosis is the rarest form of neurofibromatosis (NF), affecting an estimated 1:40,000 people, and it causes tumors to grow on peripheral nerves as well as severe and unmanageable pain. It has also been the most mysterious form of NF, both in terms of accurate clinical diagnosis and in terms of understanding its biology and genetics.

In 2005, the Children's Tumor Foundation spearheaded the publication of the first diagnostic criteria for schwannomatosis. ...

Children's Tumor Foundation 2011 Neurofibromatosis Conference Report Published!

Dr. Kim Hunter-Schaedle — Wed, 16 Nov 2011 14:21:40 +0100

We are delighted to announce that the report from the Children's Tumor Foundation 2011 Neurofibromatosis Conference has been published in the November 16th issue of the scientific journal Acta Neuropathologica.

Held in Jackson Hole, WY in June, the 2011 NF Conference was our biggest to date attracting over 300 international NF researchers and clinicians. We thank the Conference Co-Chairs Dr. Nancy Ratner (Cincinnati Children's Hospital Medical Center) and Dr. Michel Kalamari...

Are you Age 40-70 with NF1? This Bone Study Needs You!

Dr. Kim Hunter-Schaedle — Tue, 15 Nov 2011 15:03:39 +0100

The neurofibromatosis clinical team at the Cincinnati Children's Hospital Medical Center is conducting a research survey to find out if people with neurofibromatosis type 1 (NF1) break their bones more often and have different types of broken bones (fractures) than those who do not have NF1. Adults 40-70 years old with NF1 and their spouses and/or siblings who do not have NF1 may be eligible to participate. The information learned from this ...

Children's Tumor Foundation Co-Sponsors 2012 International NF2 Meeting

Dr. Kim Hunter-Schaedle — Mon, 14 Nov 2011 16:42:53 +0100

The Children's Tumor Foundation is delighted to announce our co-sponsorship of the third "State of the Art" International NF2 Conference to be held at the Manchester Conference Center, United Kingdom, May 21-22, 2012. The meeting will be hosted by the Manchester University NF2 Multidisciplinary Team.

The "State of the Art" meeting is a key event for the NF2 clinical and research community. Past "State of the Art" meetings were held in Paris (2006) and Las Vega...

Taking the REiNS on Neurofibromatosis Clinical Trial Design

Dr. Kim Hunter-Schaedle — Wed, 26 Oct 2011 13:12:20 +0100

As neurofibromatosis clinical trials increase in number, the clinicians leading them are keen to design the trials to be as effective and meaningful as possible. A key part of this effort is developing the right trial endpoints - measures and metrics that can be used to determine if a drug or intervention is effective or not. To tackle this area, a t...

NF Forum Topics Survey

Endurance Admin — Fri, 21 Oct 2011 15:12:27 +0100

We are planning the 2012 NF Forum in New Orleans, June 8-10, and we'd like your input. Please click here and take our survey of possible seminar topics. It's for you, tell us what you want!

Crucial Funding For NF Research

George Orfanakos — Wed, 12 Oct 2011 12:58:27 +0100

As many of you know, the primary federal support for NF research comes from the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense. NF has been supported through this program since 1996, and this funding has been critical to the great strides we have made in NF research. With CDMRP funds, researchers have been able to:

Bringing Individuality to Clinical Trials – the Responsibility of Medical Foundations?

Dr. Kim Hunter-Schaedle — Tue, 04 Oct 2011 19:57:00 +0100

Clinical trials are showing that drugs don’t always work on every person with a specific medical condition. This is most likely due to genetic differences that make some patients less responsive to specific drugs. Understanding an individual’s genetics is likely to be a key driver in future decision making on drug selection for individual patients. However, pharmaceutical companies have not yet ...

Children's Tumor Foundation NF2 Clinical Trials Report to Publish

Dr. Kim Hunter-Schaedle — Mon, 03 Oct 2011 16:22:55 +0100

The Children's Tumor Foundation is delighted to announce that a Foundation-spearheaded paper outlining progress in NF2 clinical trials and strategies for further accelerating these trials has been accepted for publication in the American Journal of Medical Genetics. This paper, "Consensus Recommendations for Current Treatments and Accelerating Clinical Trials for Patients with Neurofibromatosis Type 2" was authored by 17 intern...

Foundation's NF Clinic Network Director Advances Brain Tumor Vaccine Research

Mary Vetting — Wed, 28 Sep 2011 17:32:41 +0100

Dr. Chris Moertel, Director of the Children's Tumor Foundation Neurofibromatosis Clinic Network Affiliate Clinic at the University of Minnesota, is making progress in what has largely been an elusive area for clinical researchers - the development of vaccines to treat brain tumors. Dr. Moertel pioneered these studies by successfully halting brain tumor growth in a dog which had been injected with cell matter harvested from its own tumor. He has since advanced the trials ...

NIH Offers Director’s Transformative Research Awards Up To $25M/Year

Dr. Kim Hunter-Schaedle — Wed, 21 Sep 2011 16:10:18 +0100

Announcing a terrific funding opportunity from the National Institutes of Health - the NIH Director’s Transformative Research Awards:

Exceptionally innovative, high risk, original and/or unconventional research
Clinical, basic, and/or behavioral/social science research projects
Up to $25 million total costs per year for a single project
One-third of total funding budget geared to projects with more than $1 Mill...

NF1 Learning Disabilities - Key Clinical Trial Published; New Molecular Cause Identified

Dr. Kim Hunter-Schaedle — Tue, 20 Sep 2011 17:15:46 +0100

Learning disabilities, ranging from mild to severe, may affect as many as two-thirds of those with NF1. These learning disabilities were poorly understood for a long time, until around six years ago when groundbreaking research from the lab of Dr. Alcino Silva (UCLA) showed that the drug Lovastatin, traditionally prescribed for cholesterol lowering, appeared to correct NF1-related learning disabilities in mice genetically engineered to have these deficits.

Children’s Tumor Foundation-Funded Research Shows Promise of Dual Drug Tumor Therapy

Dr. Kim Hunter-Schaedle — Thu, 15 Sep 2011 19:09:50 +0100

Malignant peripheral nerve sheath tumors (MPNSTs) are among the tumors that can occur in NF1, but these malignancies are particularly challenging to treat and control. One reason for this is that MPNST cells appear to undergo changes that make them reistant to traditional treatments such as chemotherapy. Cuurent Children’s Tumor Foundation Young Investigator Awardee Dr. Thomas de Raedt, a postdoctoral fellow in th...