Neurofibromatosis Network - Colorado

06/14/2018

HOUSE APPROPRIATIONS COMMITTEE PASSES $15 MILLION FOR NF RESEARCH

Thank you to all those helping us advocate for federal funding for NF research by contacting your congressmen. As a result of your efforts the House Appropriations Committee passed their FY19 Defense bill that includes $15 million for the Peer-reviewed Neurofibromatosis Research Program (NFRP). What’s next? The Senate Appropriations Committee is scheduled to consider their FY19 Defense bill the week of June 25. Stay tuned and we will continue to keep you informed as this important legislation moves forward.

The Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and building and supporting NF communities.

06/09/2018

NF Awareness month has ended, but unfortunately NF has not. You can still GET INVOLVED in helping us raise money for research, treatments, and support to those affected by it, by bidding on some truly amazing products donated by fabulous businesses that care about you. Bidding open nationwide, auction ends June 9th at the Docs Rock for NF concert in Orlando, FL, (need not be present to win). Get started at https://www.nfnetwork.org/events/docs-rock-for-neurofibromatosis/

05/11/2018

The Doodle4NF auction starts TODAY (5pm ET, 2pm PT) on eBay - www.ebay.com/sch/nfinccharity/m.html
Doodles will appear at 1 minute intervals.
Most of the doodles will come up today (auction for this batch ends on May 20).
Doodles #2 & #3 will come up at 2pm PT on May 11 (auction for this batch ends on May 21).

05/02/2018

Did you know that Neurofibromatosis affects more people than cystic fibrosis and muscular dystrophy combined, yet most people have never heard of it and even more people have trouble pronouncing, Neurofibromatosis.

But we can change that! This year, we're joining campaign to generate more awareness of neurofibromatosis and the people this disorder affects. Our goal is to spread the word “Neurofibromatosis” across social media so that it is known in every household.

Here's how you can help, take our 4-part challenge! https://www.nfnetwork.org/fundraising/nf-awareness-campaign/

02/26/2018

We need YOU, NF advocates from all 50 states, to RAISE YOUR VOICE for Neurofibromatosis Research! It just takes two minutes to fill out the simple form and:
1. Email your Congressional members today using the link below to encourage their support of NF Research.
2. Post this request on your social media pages and "ask" your friends and family to write their representatives, too!
https://nfnetwork.org/advocacy/advocacy-action/

02/22/2018

is happening tomorrow! What is you say?
It’s a fundraiser for the Neurofibromatosis Network inspired by Gillian Anderson, & The X-Files, on Feb 23, Scully’s birthday, in honor of Gillian's brother Aaron. Guess what! There's even prizes! Find out how to participate at https://www.nfnetwork.org/pages-events/scully-coffee-4nf-1/…

The Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and building and supporting NF communities.

02/15/2018

Great news - AstraZeneca and Merck, today announced that the U.S. Food and Drug Administration has granted Orphan Drug Designation for selumetinib, a MEK 1/2 inhibitor, for the treatment of neurofibromatosis type 1.

Please read the article below for more information on this exciting new development.

AstraZeneca and Merck (NYSE:MRK), known as MSD outside the U.S. and Canada, today announced that the U.S. Food and Drug Administration (FDA) has grant

02/05/2018

The NF Network NEEDS your vote TODAY to help us win an original Jeff Hanson Painting for a LIVE AUCTION for Chicago's Inaugural NF Hope Concert. Please share with your friends and families and ask them to nominate NF Network - Wheaton, IL at, https://www.jeffhansonart.com/?v=7516fd43adaa

02/05/2018

Read about our member organization, NF North Central's Concert to raise NF awareness and research funds and how the band did something they’d never done before: $100 for the chance to get up on stage and sing with Six Mile Grove. Donations began pouring in, requests were shouted above the crowd, and audience members stepped into the spotlight, one by one, to “rock out” with the band.

The Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and building and supporting NF communities.

01/31/2018

This month's Network News People Spotlight is on Karen Peluso, Executive Director of Neurofibromatosis Northeast who has been advocating for NF research funding for 30 years and counting. Read how it all began and of the great work that they are doing representing NF families in NY, MA, CT, RI, VT, NH, MA.

The Neurofibromatosis Network is the leading national organization advocating for federal funding for NF research and building and supporting NF communities.

01/29/2018

Our member organization, NF Michigan, has donated $25,000 to the Steensma Laboratory to help fund neurofibromatosis research!

Learn more about NF Michigan by visiting their website, https://www.nfmich.org/.

We are extremely grateful to NF Michigan for donating $25,000 to the Steensma Laboratory to help fund neurofibromatosis research! Thank you for supporting Van Andel Institute.

Learn more about NF Michigan by visiting their website, https://www.nfmich.org/.