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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Archive for the “Learn About Neurofibromatosis” Category

Jasmine

New NF Navigator/Social Worker: Dedicated to Care!

NF Midwest is truly focusing on CARE and is thrilled to have hired Jasmine Mitchell, a social worker, to support individuals and families in our NF Midwest community.

Jasmine will be a patient navigator who is available to help patients and parents better navigate and understand the complexities of neurofibromatosis. She will be a community Read the Rest…

Tracey (3)

New Codes for Removing a High Quantity of Neurofibromas

Leading the Fight for Options in Treating Dermal Neurofibromas:
NF Midwest gets new procedure codes approved.

For two years NF Midwest has been working closely with Dr. Taylor, a father of an adult with NF, to clarify what many call electrodesiccation or what should more accurately be called the electrosurgical removal of neurofibromas in high quantities under general Read the Rest…

be informed for posts-01

be iNFormed – Types of Neurofibromas in NF1

Neurofibromatosis Midwest is pleased to release another article as part of our be iNFormed education initiative.

This short article covers explains the different types of neurofibromas generally found in neurofibromatosis type 1.  It was written for us by James Tonsgard, MD the director of the NF Clinic at the University of Chicago.

Check out the article here and be Read the Rest…

ltf retreat

2016 NF Family Wellness Retreat in Wisconsin

The Littlest Tumor Foundation is hosting its sixth annual NF Family Wellness Retreat at the Imago Dei Village campground (Clintonville, WI) from August 12th-15th, 2016. Reservations are required.

Open to and designed for children with NF, their siblings, parents and/or caregivers.
Parents can relax and unplug in wellness-centered activities such as yoga, meditation, massage and support circles.
Children Read the Rest…

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Positive Exposure for Neurofibromatosis

NF Midwest is very excited to have Rick Guidotti of Positive Exposure speaking at our symposium Saturday, October 24th.

Rick is an award winning fashion photographer who uses photography and video to transform public perceptions of people living with genetic, physical and behavioral differences.

Seven years ago we were very fortunate to have Rick speak at our symposium and to take beautiful photos Read the Rest…

be informed for posts-01

Update: Insurance Coverage for the Removal of Neurofibromas

If you have cutaneous neurofibromas that are causing you any distress you CAN have them removed. They are ALMOST always covered by insurance, Medicare and Medicaid if the paperwork filed by the physician is properly coded and documented.

As of October 1, the United States has transitioned from ICD-9 (International Code of Diseases) to updated ICD-10 Read the Rest…

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25th Symposium and (new) iNFo Fair

Our 25th Annual Neurofibromatosis Symposium is scheduled for Saturday, October 24th and new this year, it will include an iNFo Fair!

The NF Symposium and iNFo Fair will feature short presentations on various subjects designed to inform and

help improve the lives of those with neurofibromatosis.  There will also be tables with extra information manned by Read the Rest…

back-to-school

be iNFormed for Teachers

School is starting! If you have a child with neurofibromatosis type 1 you might find our be iNFormed article NF1 Information for Teachers helpful.

 This article is specifically meant as an aid for teachers and was generously provided to us for duplication by the British Columbia Neurofibromatosis Foundation (BCNF).

Read the Rest…