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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

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Family Matching Your Donation Up to $10,000!

In honor of NF Awareness Month, Sera Leavy and Family have generously pledged up to $10,000 in a dollar for dollar match challenge! They will match any donation of $100 and over to NF Midwest PLUS they will give $100 for each donor who signs up to give a monthly recurring gift  by joining our Monthly Read the Rest…

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…

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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…

2016 Scholarship Applications Now Being Taken

2016 Scholarship Applications Now Being Taken

Are you a student with neurofibromatosis who will be taking college courses in the fall of 2016? This could be you!

“With the financial support of this scholarship, and the boost of confidence, I am passing the courses I have already completed with success. This is huge for me because I am not only completing my Read the Rest…

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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…

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NF Symposium in Milwaukee

The Children's Hospital of Wisconsin is holding an NF Symposium on Saturday, April 16th from 8:30 am to 12:30 pm. The cost is $10 per family (patient and parents). It is $32 for additional guests. The fee includes the program, a box lunch, a children's program and admission the Discovery World. Please see the brochure for much more information.
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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…

Press the Button to ACT NOW!

Add Your Name to Support NF Research!

Last week representatives of NF Midwest, along with members of other NF organizations, stormed Capitol Hill in Washington DC asking for support of NF research in the National Institutes of Health (NIH) and through the Congressionally Directed Medical Research (CDMRP) program that is administered by the Department of Defense (DOD).

We visited your Senators and Representatives and shared Read the Rest…

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Participate in an NF Quality of Life Survey

Researchers at Indiana University are creating a survey on how having NF1 affects people’s health and well-being. This tool will become an important part of testing potential treatments for NF1.

Who can participate?

Young Adults with NF1 (18-25y)

Children with NF1 (5-17y) (with parent permission)

Parents of children with NF1 (5-17y)

What will I be asked to do?  

We are asking Read the Rest…

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Team Aydin Raises $8,000 in 9 Pin Bowling Party

Four years ago my granddaughter Aydin was diagnosed with neurofibromatosis or NF. To be perfectly honest, I had no idea what NF was. All I knew was that I was scared, angry and felt helpless. I wanted to “fix” what was wrong and had no idea what we were facing.  Our family was about to embark Read the Rest…

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Camp New Friends 2016

If you have a child with neurofibromatosis, consider sending them to Camp New Friends. Now is the time to sign up or inquire more.

Camp is NOT too costly. For the last 11 years, NF Midwest has financially supported kids from the Midwest to attend Camp New Friends by helping with travel and camp fees.

Camp Read the Rest…

Advocates in February 2015

We Need Your 2016 Personal Stories for Congress

On February 8th and 9th, NF Midwest executive director Diana Haberkamp and others will be the visiting congressional offices of your Senators and Representatives in Washington, DC to ask for support for NF research through the National Institutes of Health (NIH) and the Department of Defense’s (DOD) Congressionally Directed Medical Research Program (CDMRP). For more Read the Rest…

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$15 Million in NF Funding Secured for 2016

Big NF news out of Washington, D.C. today! 

Thanks to your dedicated and passionate outreach – your letters and emails, your calls and visits, as well as the collaborative efforts of a number of NF organizations – we are pleased to announce that $15 million in federal NF research funding to the Congressionally Directed Medical Read the Rest…

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Coming Together for Advocacy!

Thursday and Friday, December 3rd and 4th, were just amazing days for me, NF Midwest and the entire NF Community. We made great strides in advancing the neurofibromatosis cause, and all the organizations involved came together in a promising and inspiring way.

All day Thursday and also on Friday morning, I was very excited to join Read the Rest…

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DONATIONS TRIPLED ON GIVING TUESDAY!

Thanks so much for everything. A part of me wishes I had still never heard of NF, but since it’s in my life to stay, I’m so glad that all of you are too.

_____

NF Midwest is a great organization and was very helpful when we learned our son has NF. Prior to that, I Read the Rest…

NFRegistry

Sign Up for the Neurofibromatosis Registry

NF Midwest has partnered with CTF to promote the NF Registry.

The NF Registry is a database where anyone who has Neurofibromatosis (NF) Type 1, Neurofibromatosis Type 2, or schwannomatosis can register their contact information and include how NF or schwannomatosis affects them. This information will then be used to determine who may be 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…

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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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Awareness Color for Neurofibromatosis

At NF Midwest we are frequently asked what the “awareness color” is for neurofibromatosis for use in ribbons, etc. So we’re going to attempt to set the record straight!

First, understand there is no all-powerful, divine being that bestows awareness colors. Also, as far as we know there has never been any sort of agreement Read the Rest…

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Participants Needed for NF1 Study on Coping with Pain

 Coping with Pain: an ACTive Approach

 

Do you have NF1 and one or more plexiform neurofibromas?
Do you have pain that has lasted three months or more?
Are you between the ages of 16 and 34 years?

 

If you answered yes to all these questions, you may be eligible for a new study at the National Cancer Institute in Bethesda, Read the Rest…

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Consider One Final Gift

Our fiscal year is coming to an end on September 30.

Your generosity in our fiscal year 2015 dictates what programs we are able to fund in 2016 budget which we are planning now.

 

Please consider one final gift for FY2015, or better yet,

KEEP HOPE IN MOTION

by setting up a small automatic monthly giving donation.

 

You can donate 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…

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NF Midwest Campers Return!

This year eleven campers and counselors from the NF Midwest region attended Camp New Friends in West Virginia. NF Midwest helped with travel and/or camp tuition for nine of those campers. We also provided support funds to the Brainy Camps organization specifically for Camp New Friends.

Today we greeted eight of the campers and counselors on Read the Rest…

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Telling Your Child About Their Neurofibromatosis

We frequently get asked about how to tell a child they have neurofibromatosis…or whether to tell them at all. Obviously, this is a difficult decision and an important discussion. While we recommend telling and including a child in a way that is appropriate for their age, ultimately it is up to the parents.

Consider though Read the Rest…

Oswald_Peter

Neurofibromatosis Midwest Announces New Board Member

Neurofibromatosis Midwest is pleased to announced the appointment of Peter Oswald, Carlinville, IL, as a new member of its Board of Directors.

“Peter Oswald brings a great spirit of commitment and marketing expertise to our organization,” noted Diana Haberkamp, Executive Director of NF Midwest. “We are fortunate to have him join our board as we continue Read the Rest…

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Chicago Neurofibromatosis Family Day

Join us Saturday, September 5th!

Make your plans now to join NF Midwest on Saturday, September 5th in Geneva, Illinois for food, baseball, fireworks and more!

This is a day for NF individuals, family and friends to meet, socialize and have some fun!

 

Here’s the schedule of fun:

3:00 –  Gates Open

4:00 to 5:30 – Enjoy a pre-game Read the Rest…

Valley Park Chuck a Luck2

Wilburns Doin’ It 4NF!

So far this year we’ve had all sorts of wonderful people and groups coming forward and Doin’ It 4NF! There are so many that we can’t possibly highlight them all, though we will certainly try!

This past weekend the Wilburn family and their friends had a “Chuck-A-Luck” booth at Valley Days in Valley Park, MO. Read the Rest…

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Children 9-13 with NF-1 Needed for Study

Bonnie Klein-Tasman, Ph.D and her team at the University of Wisconsin-Milwaukee are looking for children ages 9 to 13 with NF-1 to participate in a quick research study. The study will take about 4.5 hours and will help researchers learn more about the social, cognitive, and emotional abilities of children with neurofibromatosis-1.

It’s preferred that Read the Rest…

research

NF Midwest Extends Funding on Cognitive Studies

NF Midwest has previously funded studies by Dr. Klein-Tasman’s team that has resulted in valuable information on the cognitive abilities of young children with NF1. This research resulted in the publication of four papers and a poster honored at the NF Conference.

This new funding will allow them to follow-up on the psychosocial and cognitive functioning Read the Rest…

Neurofibromatosis type 2, or NF2, a disease that causes uncontrolled growth of tumors, has affected 11 members of the extended Francis Barrette family of Clinton. Those battling the disease include, from left, Wendy Buikema, 40, holding a photo of her late mother, Jill Pearson, who was the first to be diagnosed with the genetic condition; Jamie Dornbush, 52, holding a photo of her late brother, Steve Barrette, and Alicia Rogis, 29, holding a photo of the late Francis Barrette, who has since been identified as the NF2 gene carrier in the family. He died of lung cancer in 1990. (Photo by John Schultz; from the Quad City Times)

NF Midwest Family Shares Their Amazing NF Story

When we learned from Jamie Dornbush how many, including her, in her extended family were recently found to have neurofibromatosis type 2 and saw the surgeries that several of them were facing together…we encouraged them to reach out and share their story.

It has been a very difficult year for Jamie and the Barrette family Read the Rest…

research

NF Midwest Funded Language Study Results Published

Collaborators from the University of Wisconsin – Dept. of Psychology have published a THIRD paper based on cognitive studies of children with NF1 that has been funded by NF Midwest. This article titled Language in young children with neurofibromatosis-1: Relations to functional communication, attention, and social functioning was published Research in Developmental Disabilities, volume 35, Read the Rest…

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Monthly Giving: Keep Hope in Motion

Join the many others who are participating in our monthly giving circle by signing up for automatic monthly donations of $10, $20, $50 or $100.

A monthly donation is a painless, effortless way to support neurofibromatosis and NF Midwest. Your monthly generosity gives NF Midwest a reliable income stream so that we can focus more Read the Rest…

university of wisconsin

University of Wisconsin Research Collaboration

We are excited and proud to announce our collaboration with the University of Wisconsin-Madison, Biotechnology Center. The UW Biotechnology Center and NF Midwest are currently in the process of establishing new NF research at the University of Wisconsin. This partnership marks a strong step forward in bringing new research techniques and NF awareness to Read the Rest…

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NF Midwest 2013 Annual Review

A small but mighty and well established organization – NF Midwest is here in the regional community for children and adults with NF and their extended families. And we’ve been here for over 30 years fighting a battle that personally affects us all.

Today we are proud to release our 2013 Annual Review. We Read the Rest…