Follow us on Twitter Visit us on Facebook! Check out our pins on Pinterest

Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

participate in research-01

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

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…

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

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…

NF Midwest T-Shirt

Join Our Monthly Giving Circle – Get a FREE T-Shirt

Join our Monthly Giving Circle  and for a limited time you may receive a FREE NF Midwest Neurofibromatosis Fighter T-Shirt!

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 of our resources on 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…

We can thumb

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…

2015-Its-Time-for-Giving

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…

????????????????????????????????????

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…

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…

be informed for posts-01

Recording – Managing Pain in Neurofibromatosis

In February 2013 NF Mid-Atlantic hosted a webinar on “Managing Pain in Neurofibromatosis”. The speaker was Andrew Tyler Putnam, MD from the Palliative Care Program at Smilow Cancer Hospital.

We’ve provided the recording of the webinar below. This webinar focuses mainly on pharmacological (drug) treatments for pain. It gives a great starting point for understanding the Read the Rest…

participate in research-01

Important Survey

The Department of Genetics at Stevenson University is conducting a survey on the psychological effects of “looking different” which was inspired by NF Mid-Atlantic with their series of interviews on the subject last year.

There has been so little research on the psycho-social ramifications of living with this incurable, variable, often disfiguring, and potentially Read the Rest…

be informed for posts-01

Recording – Genetics 101

We just came across this excellent 2013 “Genetics 101″ webinar recording from the RASopathies Foundation. The speaker is Beth Hopkins Denenberg, a pediatric genetic counselor.

If you’d like to learn more about genetics you may also find the University of Utah Health Services Tour of Basic Genetics helpful.

Read the Rest…

be informed for posts-01

Sign-Up for July 29 Neurofibromatosis Type 2 Webinar

The NF Network will be presenting an all new webinar on Hearing Preservation/Rehabilitation in Neurofibromatosis Type 2 on July 29th.

The presenter will be Derald E. Brackmann, MD, a Neurologist with House Clinic in Los Angeles.

Learn More

In case you’ve missed the webinars presented by various organizations over the years, we currently have eighteen available on NF Midwest’s website.

Read the Rest…