Neurofibromatosis Northeast

Neurofibromatosis Northeast NF Northeast is a non-profit org incorporated in 1988 that advocates for those with neurofibromatosis
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Join Gabrielle Saunders for a deeply restorative virtual sound meditation using crystal alchemy bowls to quiet the mind,...
06/11/2026

Join Gabrielle Saunders for a deeply restorative virtual sound meditation using crystal alchemy bowls to quiet the mind, regulate the nervous system, and ease stress. Get cozy, dim the lights, and give yourself an hour of intentional stillness and care.

No experience necessary — simply come as you are.

Monday, July 20, 2026
Virtual Event
Register here: https://us02web.zoom.us/meeting/register/dNqQoPxgT16PDLWZNVTxiQ #/registration

Questions? Contact [email protected]

Mark your calendars! Beyond Sound 2026 is an empowering, in-person NF2 workshop, where you’ll learn about and experience...
06/04/2026

Mark your calendars!

Beyond Sound 2026 is an empowering, in-person NF2 workshop, where you’ll learn about and experience communication strategies and resources for living with hearing loss. Join us to learn about updates in NF2 and to build connections in the NF2 community.

*REGISTRATION COMING SOON*

🌎🏃‍♀️ Happy Global Running Day! 🏃‍♂️🌎There’s no better day to commit to something big… like the Falmouth Road Race!Join ...
06/03/2026

🌎🏃‍♀️ Happy Global Running Day! 🏃‍♂️🌎

There’s no better day to commit to something big… like the Falmouth Road Race!

Join our team and make every mile matter 💙

🎉 SPECIAL GLOBAL RUNNING DAY PERK:
Register with us by midnight tomorrow (6/4) and you’ll receive:
✔️ An exclusive NF swag item (think backpack or gear 👀)
✔️ Personalized training support to get you race-ready

Whether you're chasing a PR or just getting started, we’ll support you every step of the way.

⏳ Don’t wait—this bonus disappears tomorrow night!

👉 http://raceroster.com/registration/112177/entry?teamEntryToken=SRDJ5JBP2Q&year=2026&slug=the-2026-asics-falmouth-road-race

🚨 NEW MERCH JUST DROPPED! 🚨Our NF Northeast store is officially OPEN—and we’re loving these new designs 💙Grab your t-shi...
06/01/2026

🚨 NEW MERCH JUST DROPPED! 🚨

Our NF Northeast store is officially OPEN—and we’re loving these new designs 💙

Grab your t-shirts and hoodies in navy, black, and asphalt gray and help spread awareness everywhere you go.

✨ Shop. Support. Make a difference.
⏳ Store closes June 7!

🛒 Shop now:
https://actionapparel.tuosystems.com/stores/ne2

05/29/2026

Innovation starts with research!

At NF Northeast, we believe that research changes lives. We are proud to fund investigators with seed money, advancing critical research in the field of Neurofibromatosis (NF). These early investments help spark new ideas, accelerate discovery, and create opportunities for breakthrough treatments and care.

We are equally proud to stand alongside the NF community in advocacy efforts that have helped secure federal funding for NF research, ensuring continued progress, awareness, and hope for patients and families.

Together, through research, we are helping build a stronger future for everyone impacted by NF.

May is NF Awareness Month.

For more information, click here for our website: https://www.nfnortheast.org/

Seeking Perspectives from the Neurofibromatosis (NF) CommunityDefin3D is participating in the NSF National Innovation Co...
05/28/2026

Seeking Perspectives from the Neurofibromatosis (NF) Community

Defin3D is participating in the NSF National Innovation Corps (I-Corps) Program and is looking to connect with members of the NF community for brief virtual interviews this summer.

We’d like to learn about experiences with:
• Monitoring tumor progression
• Medical imaging workflows
• Challenges faced by patients, caregivers, clinicians, and researchers
• Opportunities to improve imaging technology

We welcome conversations with individuals living with NF, caregivers, clinicians, researchers, and advocates.

20-minute Zoom interviews
June 2 – July 17, 2026
Confidential and for NSF I-Corps educational purposes only

This is not a research study, clinical testing, or medical advice.

Click here to start the process: https://docs.google.com/forms/d/e/1FAIpQLScz3gNj5-yLSEtt0KDEJD9XYaFl1wg01GhL-jDM-gzkZEnQQQ/viewform

Questions? Contact:
Katie Howard, MS ([email protected])
Rithvik Ghankot, MS ([email protected])
Frank Buono, PhD ([email protected])

NF patients and families are invited to join us at 9:00 AM on Saturday, June 6th, for a virtual NF coffee chat! These co...
05/28/2026

NF patients and families are invited to join us at 9:00 AM on Saturday, June 6th, for a virtual NF coffee chat! These community-building chats offer a great chance to connect with others affected by NF and engage in relaxed conversations about everyday concerns and questions. We hope you can join us at one or all of our upcoming virtual chats!

Register Here: https://us02web.zoom.us/meeting/register/AaUenObfRTSkKSg1sAvVKw #/registration

*After registering, you will receive a confirmation email containing information about joining the meeting!

Questions? Contact Anne Patterson at [email protected]

🏃‍♀️💙 Thank You, Buffalo Marathon Weekend Runners! 💙🏃‍♂️From the 5K to the Half Marathon to the Full Marathon, our incre...
05/27/2026

🏃‍♀️💙 Thank You, Buffalo Marathon Weekend Runners! 💙🏃‍♂️

From the 5K to the Half Marathon to the Full Marathon, our incredible NF Northeast runners showed up and went the distance in Buffalo this weekend!

No matter the race, every mile mattered. Your commitment to training, fundraising, and supporting the NF community is something to be proud of.

Because of you, we’re raising awareness, advancing research, and supporting individuals and families affected by neurofibromatosis.

👏 We are so grateful for each and every one of you—congratulations on an amazing accomplishment!

05/27/2026

Schwannomatosis mainly affects the peripheral nerves and is characterized by the development of multiple schwannomas (nerve sheath tumors) throughout the body.

One of the most common symptoms of schwannomatosis is chronic pain, which may occur anywhere in the body depending on where the tumors develop. The pain can be localized or widespread and is often severe. Patients may also experience tingling, numbness, or weakness. Neurological issues are common.

Unlike NF2-related schwannomatosis, hearing loss and balance problems are uncommon because vestibular (hearing nerve) schwannomas are typically absent.

Neurological symptoms may include muscle weakness, headaches, or difficulty with movement if tumors compress nearby nerves or tissues.

The skin may also be affected, including the development of dermal schwannomas (raised bumps under or on the skin) and tender nodules. Some patients may notice areas of skin discoloration or irritation near affected nerves.

Symptoms and severity can vary widely from person to person depending on the number, size, and location of the tumors.

May is NF Awareness Month.

For more information, click here: https://www.nfnortheast.org/

Address

9 Bedford Street
Burlington, MA
01803

Opening Hours

Monday 8:30am - 5pm
Tuesday 8:30am - 5pm
Wednesday 8:30am - 5pm
Thursday 8:30am - 5pm
Friday 8:30am - 5pm

Telephone

+17812729936

Website

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