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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Archive for the “Featured Posts” Category

sera web

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…

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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…

team aydin bowling pic

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

Aydin and mom and dad.

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.  Read the Rest…

camp swimming

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

Advocates in February 2015

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 Read the Rest…

capitol photo

$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!

NF organizations together for advocacy planning.

We had a great crowd at the Congressional briefing.

Tracy Wirtanen introducing the panel.

Some great Washington DC inspiration!

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 Read the Rest…

participate in research-01

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…