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Participants are needed for  a study entitled: Genetic Evaluation for the Scoliosis Gene(s) in Patients with Neurofibromatosis 1 and Scoliosis. The study is being conducted by Dr. David W. Polly, Jr. of the University of Minnesota-Department of Orthopaedic Surgery and Dr. Christopher Read the Rest...]]> Genetic Evaluation for the Scoliosis Gene(s) in Patients with Neurofibromatosis 1 and Scoliosis

Participants are needed for  a study entitled: Genetic Evaluation for the Scoliosis Gene(s) in Patients with Neurofibromatosis 1 and Scoliosis. The study is being conducted by Dr. David W. Polly, Jr. of the University of Minnesota-Department of Orthopaedic Surgery and Dr. Christopher Moertel of the University of Minnesota Department of Pediatrics

Participants must have a confirmed diagnosis of NF1 and Scoliosis.

For further information please contact:

Ivana Ninkovic, MPH MS
Spine Clinical Research Coordinator
Tel. 612-273-8082
nink0002@umn.edu

OR

Charles Ledonio, MD
mailto:nink0002@umn.edu
612-273-8035

The Department of Medical Genetics at Henry Ford Hospital in Detroit, MI is conducting a study to evaluate the genetic and molecular characteristics of breast cancer in NF1 patients. We are looking to recruit men or women with NF1 who also have a history of breast cancer. Potential participants would be Read the Rest...]]> Call for Study Participants

The Department of Medical Genetics at Henry Ford Hospital in Detroit, MI is conducting a study to evaluate the genetic and molecular characteristics of breast cancer in NF1 patients. We are looking to recruit men or women with NF1 who also have a history of breast cancer. Potential participants would be asked to sign a consent form, provide medical and family history and provide a blood sample and their breast tumor specimen (if available).  Travel is not necessary for participation. For more information please contact Renée Tousignant, MS, GC at 313-916-6970 or rtousig1@hfhs.org.

The online survey will take approximately 10 minutes to complete. Participation in this survey is voluntary. It is not necessary to answer every question and you may discontinue Read the Rest...]]> A neurofibromatosis type 2 researcher is looking for people who have been diagnosed with NF2 and have hearing loss to participate in a brief survey about communication.

The online survey will take approximately 10 minutes to complete. Participation in this survey is voluntary. It is not necessary to answer every question and you may discontinue your participation in the project at any time. If you do choose to participate in the survey, your participation will be confidential. If you have any questions about this survey, you may contact Amanda Bergner, MS CGC, the Principle Investigator at Johns Hopkins University by phone at 443-287-1914 or email at abergne1@jhmi.edu.

The survey is below.

If you want to help families affected by NF while running in the Inaugural Naperville Marathon, give NF Midwest a call!

We have your ticket to this cool race Read the Rest...]]> NF Midwest has 9 coveted spots left for the Naperville Marathon or Half Marathon. Registration opens again on March 25 at 9:00 am…but only for charity fundraising runners.

If you want to help families affected by NF while running in the Inaugural Naperville Marathon, give NF Midwest a call!

We have your ticket to this cool race experience. Call 630-945-3562 or email jenny@nfmidwest.org to let us know you are interested. In exchange for your commitment to raise at least $500 for NF Midwest, we will give you the code needed to register under our organization.

Be a part of something great and Run 4 NF! 

Check out http://www.nfmidwest.org/get-involved/run-4nf to see how Running 4 NF helps NF Midwest.  Visit www.naperville26.org for more marathon info.

Check out the newest edition of the Network Edge provided by the Neurofibromatosis Network, NF Midwest’s national affiliate. This science column provides a summary of recent highlights from NF research and clinical trials.  The NF Network and their affiliates like NF Midwest, play a central role in progress toward a cure through advocacy Read the Rest...]]>

Check out the newest edition of the Network Edge provided by the Neurofibromatosis Network, NF Midwest’s national affiliate. This science column provides a summary of recent highlights from NF research and clinical trials.  The NF Network and their affiliates like NF Midwest, play a central role in progress toward a cure through advocacy on Capitol Hill and the direct funding of research.

Every three months The Network Edge will bring you the latest research news as compiled by science writer, Kim Hunter-Schaedle, PhD.  The goal is to keep you abreast of advancements in treatment and clinical care for all forms of NF.
VOLUME 2, WINTER 2013

The Network Edge Contents:
1.  CDMRP NFRP – A Critical Funder of NF Research
2.  A Focus on NF1 Malignant Peripheral Nerve Sheath Tumors
3.  NF2 Clinical Management Updates
4.  NF1 Learning Disabilities: News from the Clinic and the Bench
5.  NF1 Clinical Management Updates
6.  What’s New in NF2 Biology?
7.  Heart and Blood Vessel Abnormalities in NF1: New Findings
8.  What’s New in NF1 Biology?
9.  NF1 Bony Abnormalities Update
10.The Evolving Link Between NF and Cancer

READ THE FULL REPORT HERE!

On Monday, January 28th the Evansville chapter held a fun productive meeting and made plans to pass out water and share information about neurofibromatosis at the Southern Indiana Classic Marathon. They also discussed the possibility of an NF Family Event and a fundraiser for NF.

The Central Read the Rest...]]> Chapters are forming throughout the Midwest to DoIt4NF.

On Monday, January 28th the Evansville chapter held a fun productive meeting and made plans to pass out water and share information about neurofibromatosis at the Southern Indiana Classic Marathon. They also discussed the possibility of an NF Family Event and a fundraiser for NF.

The Central Missouri chapter, formerly known as the Columbia chapter, also had a meeting on January 18th in Jefferson City, MO and has plans to meet the third Thursday of every month.

Participating in a NF Midwest chapter is a great way to make a difference in the neurofibromatosis cause on the ground where it really counts. We have several fledgling chapters. Please let us know if you’d like more information on one or would like to help start one in your area.

More Info.

We all know how that there is not enough neurofibromatosis and schwannomatosis awareness. We know that cause is underfunded and deserves much more. What difference will you make this year?

One resolution not to break is to DoIt4NF in 2013! The neurofibromatosis cause needs Read the Rest...]]>

We all know how that there is not enough neurofibromatosis and schwannomatosis awareness. We know that cause is underfunded and deserves much more. What difference will you make this year?

One resolution not to break is to DoIt4NF in 2013! The neurofibromatosis cause needs you. No matter your talents or time, there is definitely something you can do for NF.

Below are some ways. Another is to think of a few people you know that may be able to help with a sponsorship, a donation, a raffle item, etc. People give to people. They feel secure and happy in helping through the people they know. If you have a connection that may be able to help and aren’t comfortable asking, provide us the information and we will give it a shot.

Please, take a moment and review the options and pick at least one thing that you will Do4NF this year.

Learn more about schwannomatosis.