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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Archive for the “NF News” Category

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…

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!

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…

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.

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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…

ribbon-01

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…

Press the Button to ACT NOW!

Voice Your Support for Neurofibromatosis Research

Press the Button to ACT NOW!

The House of Representatives is in budget negotiations and we need people to contact their Congressman NOW and ask them to include $15 million for the Peer-Reviewed Neurofibromatosis Research Program (NFRP)

Please call or email your Congressman directly…or if you don’t have time for that, the NF Network has set-up Read the Rest…