NF Smarty Pants

Archive for the ‘Research’ Category

Scientists have learned that twenty-six gene mutations are likely in patients with the most common form of lung cancer. This number more than doubles what was previously known about genes associated with the disease.

Neurofibromatosis is among the newly identified genes.

Read about this story in:

• The LA Times
• Reuters
• Science Centric

The University of Texas MD Anderson Cancer Center announced that according to their research results, cranial radiation may not be necessary for young children with low-grade glioma.

Low-grade glioma is the most common form of brain tumor in children. In cases where surgery is not beneficial, these scientists say that chemotherapy is just as effective a treatment as cranial radiation.

According to Dr. Joann Ater, “If we can delay radiation, then we allow more time for our youngest patients to develop physically, which could decrease some of the long-term effects from treatment.”

Dr. Roger Phipps joins The Maine Institute for Human Genetics and Health as the head of a newly formed Bone Genomics and Cancer research team. He and six scientists will study genetic diseases that affect bones, such as NF1 and cancer.

Read the full press release (pdf).

On Saturday, Congress finished appropriating $10 million within the Defense Appropriations bill for the Army’s NF Research Program. This is a $2 million dollar increase from last year.

Dr. Roger Packer provides his summary on the state of childhood brain tumor research and treatment at HemOnc Today.

Doctor Aaron Gitler of the University of Pennsylvania is recognized as a Rita Allen Foundation Scholar for 2008. He will receive a three-year $300,000 grant to further his studies into treatment options for neurofibromatosis.

I received this message from NF, Inc.

Urgent request!

The most important thing we can do to promote NF research is to tell our Representatives in Congress that we need their help. If we don’t tell them, they don’t know!!

We have just learned that the next 48 hours are a critical time in the Defense Appropriations process. We are trying desperately to save the Department of Defense Neurofibromatosis Research Program (CDMRP) in these, the most difficult economic times for our country.

Please take 5 minutes to call or write to your members of Congress. Ask them to contact Congressmen John Murtha and Bill Young in the House, and Senators Daniel Inouye and Thad Cochran, in the Senate. Have your representatives ask Murtha, Young, Inouye, and Cochran to provide $20 million for Neurofibromatosis research through the Army’s NF Research Program in the Fiscal 2009 Department of Defense Appropriations bill.

To find your Representatives, go to this site and send a message. If we, the members of the NF Community don’t do this, who will?

Crain’s New York has a story about how researchers are finding it easier to get funding for specific diseases like neurofibromatosis. Through researching the diseases that are more rare, scientists can find results that also pertain to the more common ones, such as cancer and high cholesterol.

In a study of glioblastoma multiforme (GBM), a deadly and common form of brain cancer, researchers may have discovered why this cancer is so resistant to drug and radiation treatments. Patients diagnosed with GBM only live for one year on average.

Traditional cancer treatments focus on the main pathways of cancer formation. Thanks to the Cancer Genome Atlas project, scientists are seeing a far bigger picture than they have ever before. Three gene mutations, previously unknown as causes for GBM, are now acknowledged as contributing to its growth and development:

1. the NF1 gene
2. the ERBB2 gene, which is involved in breast cancer
3. and PIK3R1, which is involved in insulin production and was not known to be a part of tumor formation at all

These three previously hidden pathways now give researchers additional information to develop effective treatments.

To read more about these findings, please see:

• Baylor College of Medicine article
• Dana-Farber Cancer Institute article
• Genetic Engineering & Biotechnology News

NF, Inc. Midwest’s Annual Symposium has released its line-up for the 2008 conference. The brochure and registration form are both available for downloads as PDF files from their website.

Saturday, October 18
8:00 am – 4:00 pm

McDonald’s Hamburger University
2815 Jorie Blvd.
Oak Brook, IL

Topics include:

• Positive Exposure “Celebrating the Differences” (Rick Guidotti)
• Neurofibromatosis Overview
• SSDI, SSI, Medicaid and Medicare Overview (James M. Donner, JD)
• Neurofibromas: A Closer Look (James Tonsgard, MD)
• NF-1 Research Update: How Neurofibromas Form (Nancy Ratner, MD)
• NF Type 1 in Children (Robert Listernick, MD)
• Treatment Approaches to NF2 (James Tonsgard, MD)
• Approach to Vestibular Nerve Tumors and Hearing in Patients with NF-2 (Miriam Redleaf, MD)