Neurofibromatosis and Schwannomatosis Southern

05/28/2026

Help guide the future of NF research! See below for an opportunity to tell scientists what you want to get from future NF research.

05/21/2026

Because not all NF/SWN is tumors... We ALL get arthritis. The Birmingham Medical News shared this relatively new treatment for knee arthritis. See below.

05/20/2026

Did you know...? Radiation exposure comes from sitting in the sun, or flying/hiking close to the sun. Extra exposure comes from some medical imaging. Radiation causes DNA damage that our bodies are ready for and able to fix, but with some genetic syndromes, including NF1 (not so much schwannomatosis), there is an increased risk of DNA damage resulting in cancer. This can happen in one of two ways: 1) A super high level of radiation in a short period of time (irradiating a tumor to try to stop it growing), or 2) lower levels of radiation that add up over the lifetime.

MRI scans and ultrasound involve zero extra radiation, but CT scans and PET scans do use radiation. Although the amount is low, we try to avoid those scans for NF1 patients unless your doctor thinks it's necessary. NF1 patients who have been treated with medical-level radiation by a radiation oncologist may need more frequent MRI scans afterwards to make sure a malignancy (cancer) does not arise in the body region that was treated. To-date, no studies have identified any significant risk from microwaves, cell phones, or cell towers.

It is okay to get CT scans, PET scans, and X-Rays regardless of NF1, if they are needed--but you can always ask if an MRI scan would be just as effective.

05/19/2026

05/18/2026

This study is so cool -- please share with any groups/folks who are in the California area. They need children/adolescents with OR without NF1

05/18/2026

https://www.facebook.com/share/p/1CHcqAxYGc/?mibextid=wwXIfr

The NF Registry has officially relaunched on the National Organization for Rare Disorders, Inc. (NORD)® IAMRARE® platform this World NF Awareness Day.

By sharing your experience with NF, you help researchers accelerate drug discovery, improve care, and advance treatments for the entire NF community.

As a participant, you’ll have access to the latest NF discoveries to guide your care and receive personalized updates on research studies and clinical trial opportunities.

Join the patient-powered research effort → nfregistry.org

05/12/2026

We need models, stat! NF and any type of Schwannomatosis patients — we need you this Friday May 15 from 11:00-2:00 pm for voluntary photos that will be used on the NF/SWN Program’s website and promotional materials. We need all ages— whole families are welcome! At the Kirklin Clinic at UAB, 2nd floor, Neuroscience Two clinic. Just let me know if you are coming and your diagnosis and if any family will be joining you. Consent forms will be completed same-day. You do NOT need to be a current patient.

05/07/2026

This study is still seeking adults with NF (must be at least 40 years of age) for a one hour cognitive study. Participants who qualify and complete the study receive $40 compensation. To learn more visit https://redcap.med.fsu.edu/surveys/?s=WW9P3DLCLAHJAXEC

05/07/2026

Register today for my virtual talk on the real risks of cancer in NF and Schwannomatosis.

05/04/2026

How neat is it to get a shout-out from the NF Network!? We had a great time hosting everyone at UAB a few weeks back. Also, PLEASE attend my virtual talk and feel free to share! It is an easy to understand discussion about what we know about cancer risk associated with NF and Schwannomatosis that is intended to INFORM and REASSURE. Make sure to register early!

Cancer doesn’t wait—and neither should understanding it. 🔗 Register here: https://forms.gle/hm8MkK2t2LXDarqi8

Join us on May 11, 2026 at 3:00 PM ET for a powerful session featuring Rebecca (Steinberg) Brown, MD, PhD, as we dive into Cancer Risk in NF/SWN: Assessment, Diagnosis, Treatment & Future Directions.

From risk assessment to cutting-edge treatment approaches, this conversation will explore where the science is today—and where it’s going next for Neurofibromatosis (NF) and Schwannomatosis (SWN).

Because better understanding leads to earlier action, better care, and better outcomes.

Learn more about Dr. Brown: https://www.ihealthwellness.org/Our-Team | https://scholars.uab.edu/19627-rebecca-brown

Interested in partnering with us for this event? Reach out to the [email protected]

📅 Mark your calendars and take a step toward better health! For more information, contact: [email protected]

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Engage with patients, providers, and partners through mission-driven programs. Learn more: Be a Sponsor. Visit https://www.ihealthwellness.org/events. Email: [email protected]

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💙 Together, we’re building a more connected, compassionate future for the NF/SWN community.