Neurofibromatosis Network

The NF community may have its ups and downs but we won’t ever lose our fight. This community is 120,000 strong. This community is resilient. This community inspires action. For 29 years, Neurofibromatosis Network has led the charge in advocacy. We won’t ever stop fighting for you, and we won’t ever stop fighting for NF research.

Yesterday, we learned that NF research funding, through the Congressionally Directed Medical Research Program (CDMRP), did not receive funding in the recently passed fiscal year 2025 continuing resolution (CR). While this doesn’t make this news any easier to deliver, NF is not alone - 23 other CDMRP programs are in the same situation. While this is devastating news, the NF community is strong and we intend to do everything in our power to restore funding for this important program. We won’t give up in this fight and will keep fighting for you and the entire NF Community! We will continue to update you and share recommended courses of action as soon as possible.

Join Dr. Paul Moots, Dr. Vanessa Merker and the NF Network as they explore clinical trials and discuss how you can contribute from home to help shape the future of neurofibromatosis (NF). Virtual Zoom Meeting Wednesday, April 2, 2025 7 pm Central Standard Time, U.S. The event is free, but RSVP is required. https://bit.ly/4khgVLY #neurofibromatosis #clinicaltrials

Thank you for your hard work over the past few days. As previously mentioned, the FY25 Continuing Resolution—which includes a 57% cut to medical research funding through the Congressionally Directed Medical Research Programs (CDMRP)—has passed in the House and is now headed to the Senate. We are not finished yet! Action is needed now to encourage the Senate to vote against the Continuing Resolution (CR), which could be on the floor as early as today. This bill will significantly reduce funding for the CDMRP, including the Neurofibromatosis Research Program (NFRP). Here is a new form to reach out to your Senators: https://lnkd.in/g65qWZCf Please share this with your friends, family, and loved ones to help advocate for NF. Thank you for taking action today and for being ONE VOICE for the NF community! #neurofibromatosis #AdvocacyMatters #NFadvocate #washingtondc #NFAdvocates

Congress felt the immense power of the NF Community yesterday! Thank you to everyone who took the time to write to their congressional offices to express that research funding for NF is important to you. Because of your efforts, 2,702 messages were sent to Congress yesterday! Unfortunately, the FY25 Continuing Resolution, which includes a 57% cut to medical research funding through the CDMRP, has passed in the House and is now headed to the Senate. We will keep you informed and will be seeking your continued support. Together, we'll continue the fight for federal funding for NF. We are profoundly moved by your hard work! To learn more about what we do, please visit us at https://www.nfnetwork.org. #neurofibromatosis #AdvocacyMatters

Action is needed now to encourage Congress to vote against the Continuing Resolution (CR) that will be on the House floor as early as Tuesday. This bill significantly reduces funding for the Congressionally Directed Medical Research Programs (CDMRP), which includes the Neurofibromatosis Research Program (NFRP). Your voice is now more important than ever. Use this simple form: https://lnkd.in/gphc6jun We need you, your friends, family, and loved ones to be NF advocates and ask Congress to vote against the full year CR and enact a full year Defense Appropriations bill that fully funds the CDMRP and the NFRP. Your representatives need to hear from YOU. Your personal contact: 1. Shows members of Congress that there are many voters affected by NF 2. Requests that Congress fully fund medical research at the Department of Defense through the Congressionally Directed Medical Research Program, including the NFRP Thank you for taking action today and being ONE VOICE for the NF community! #neurofibromatosis #AdvocacyMatters #NFadvocate #washingtondc

Action is needed now to encourage Congress to vote against the Continuing Resolution (CR) that will be on the House floor as early as Tuesday. This bill significantly reduces funding for the Congressionally Directed Medical Research Programs (CDMRP), which includes the Neurofibromatosis Research Program (NFRP). Your voice is now more important than ever. Using a simple form: https://lnkd.in/g6TG8qtV We need you, your friends, family, and loved ones to be NF advocates and ask Congress to vote against the full year CR and enact a full year Defense Appropriations bill that fully funds the CDMRP and the NFRP. Your representatives need to hear from YOU. Your personal contact: 1. Shows members of Congress that there are many voters affected by NF 2. Requests that Congress fully fund medical research at the Department of Defense through the Congressionally Directed Medical Research Program, including the NFRP Thank you for taking action today and being ONE VOICE for the NF community! #neurofibromatosis #AdvocacyMatters #NFadvocate #washingtondc

Here's a sneak peek of our medals for our Ducky Dash 5K in #wheatonillinois Join us on May 17 to run or walk to stomp out neurofibromatosis! https://lnkd.in/gNTCBAMx #neurofibromatosis #5k #runningcommunity #rubberduckie #NFnetwork

Researchers are increasingly bringing clinical trials to people's home and local communities. Join Dr. Paul Moots, Dr. Vanessa Merker and the NF Network as they explore clinical trials and discuss how you can contribute from home to help shape the future of neurofibromatosis (NF). Sign up for this free webinar today! https://lnkd.in/g9XJ_Nxu #neurofibromatosis #clinicaltrials