Pain Awareness Month

September is Pain Awareness Month!

Chronic pain affects millions—including people living with NF and SWN. Tumors, bone complications, migraines, and other NF-related issues can make pain a daily reality.

This month, we’re raising awareness about:

  • The impact of pain on individuals and families
  • The need for effective pain management strategies
  • Reducing stigma around pain
  • Supporting research for better treatments

Together, we can push for better pain care and understanding.

Here are just a few resources on pain:

2013 NF Midwest Be iNFormed article on pain

2026 NF Midwest Be iNFormed article update on pain

CTF Resources on Schwannomatosis Pain and Resiliency

Great Resources from the US Pain Foundation

NF1 Plexiform Neurofibroma Pain Scale Research Study

Recruiting for children (8+ years), adolescents, and adults with NF1 and plexiform neurofibromas (pNFs) for a research study to complete pain questionnaires electronically over a two-week period from home

Recent Posts

  • Why Clinical Trials Matter, and Why They Matter Especially for NF

    Every treatment that exists today: every medication, every therapy, every breakthrough, started somewhere. It started with a question, a hypothesis, and eventually, a clinical trial. May 20 is National Clinical Trials Day, a moment to recognize the remarkable system that turns scientific ideas into real-world answers. For the NF community (patients, families, caregivers, and advocates)... Read More
  • Skylar's Story: Strength, Courage & a New Beginning 

    Some journeys begin before a child can even walk. For Skylar, hers started at just 5 months old, when she broke her left leg. It would be the first of many chapters in a story defined not by hardship, but by an extraordinary spirit that refused to be held back.  A week after that initial... Read More

Responses

Respond

Your email address will not be published. Required fields are marked *