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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

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…

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…

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…

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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…

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…