Neurofibromatosis (NF) encompasses a set of genetic disorders that cause benign and malignant tumors to grow along various types of nerves; it can also affect the development of bones and skin. There are three main types of NF tumors: neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2) and schwannomatosis. NF1 is the most frequent of the three; one in every 3,000 children is born with the disease.
The Children’s Tumor Foundation (CTF) is the leading non-governmental funder of scientific research into neurofibromatosis and has funded NF studies for over 25 years. Their goal is to identify NF drug therapies and improve the lives of those living with the disorder. The Foundation also endeavors to increase public awareness of NF and provides resources for NF patients and their families.
The CTF’s annual NF Conference is being held in Baltimore, Maryland this year from June 5th — June 8th, 2010 with the theme, Back to the Future. The premier annual meeting provides a forum for basic and clinical NF investigators to present their research. Close to 300 clinicians and scientists from around the world will convene to share the latest developments in neurofibromatosis research.
Reporting from the conference
Although the NF Conference is restricted to physicians and scientists, this year the CTF will update the public about the research presented at the conference with a series of blog posts and short videos from the conference floor. See Dr. Kim Hunter-Schaedle’s video below and visit the CTF Blog for updates throughout the weekend and early next week.
The CTF also uses social media: you can favorite them on Facebook and follow them on Twitter @ChildrensTumor.
I’ve been actively involved in NF research for the last four years. This year at the NF Conference, I’ll be presenting research directly comparing gene expression profiles of genetically engineered mouse NF1 models and human NF1 tumors. I encourage readers to visit CTF Blog this coming weekend/early next week and follow along with the research presented. Everyone here at Highlight HEALTH looks forward to the day when ALL scientific conferences include a social media component to connect the public with the research.
May is NF Awareness Month, and in a particular effort to help get the word out about NF, today — Thursday, May 20th — is NF Awareness Day.
Neurofibromatosis (NF) is a genetically inherited disorder that predisposes individuals to the development of a variety of benign and malignant tumors in the central and peripheral nervious systems. The disorder affects neural crest cells and causes tumors to grow along various types of nerves and can also affect the development of bones and skin.
Neural crest cells: specialized cells that contribute to the formation of multiple tissues, including sensory nerves, the enteric nervous system that controls the gut, pigment cells of the skin, various skeletal and connective tissue of the head, and part of the valves and blood vessels of the heart. During early development, neural crest cells — a transient, multipotent cell population – migrate to many different locations and differentiate into many cell types within the embryo.
The Children’s Tumor Foundation (CTF) is the leading non-governmental funder of scientific research into neurofibromatosis. The CTF has funded NF research for over 25 years with the goal of identifying NF drug therapies and improving the lives of those living with the disorder. The Foundation also endeavors to increase public awareness of NF and provides resources for NF patients and their families. Straight from the CTF, here are ten things to be aware of about NF: Read the rest of this article …
A routine screening test for several metabolic and genetic disorders in newborns, the heel-stick procedure, is not effective in screening for cytomegalovirus (CMV) infection, a leading cause of hearing loss in children, according to research published in the April 14 online issue of the Journal of the American Medical Association.
About 20,000-30,000 infants are born infected with CMV each year, 10-15 percent of whom are at risk for eventually developing hearing loss.
The study, funded by the National Institute on Deafness and Other Communication Disorders (NIDCD), one of the National Institutes of Health, is part of a multicenter research project headed by the University of Alabama at Birmingham that is seeking to find the most effective screening test for CMV infection in newborns. The standard method for detecting CMV infection in newborns is labor-intensive and not conducive to a widespread screening program.
A new study has found the addition of long-acting beta-agonist therapy to be the most effective of three step-up, or supplemental, treatments for children whose asthma is not well controlled on low doses of inhaled corticosteroids alone.
The study was designed to provide needed evidence for selecting step-up care for such children and was supported by the National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health. Researchers also identified patient characteristics, such as race, that can help predict which step-up therapy is more likely to be the most effective for a child with persistent asthma.
The study found that almost all of its participants had a different response to the three different treatments. Although adding the long acting beta-agonist step-up was one and one-half times more likely to be the best treatment for most of the study group, many children responded best to other two treatments instead.
The results were presented March 2 at the American Academy of Asthma, Allergy and Immunology 2010 Annual Meeting in New Orleans and are published online in the New England Journal of Medicine.
