Raise Awareness

Research brings promise to the future! Awareness brings hope now!

Increase Awareness. Reduce Stigma. Grow Love.

You can become an activist and help raise awareness for NF. We have included here some tools to help. You may also contact the office about other ways to raise awareness.

How to Increase Public Awareness and Acceptance of NF?

Share a Story

Everyone has a story about how NF has impacted their lives. It may be that you have a child with NF or schwannomatosis; you may be affected; you may have seen the struggles of a friend; or maybe you just passed someone who has NF at a grocery store.

If you share that story on social media, through email or in a conversation with friends then you raise awareness.

You can take it a giant step further by creating a fundraising and awareness page on Firstgiving and sharing that with the world.

How to Set-Up Firstgiving

Learn About NF

Learn everything you can about NF1, NF2 and schwannomatosis and teach the world. Be knowledgeable and iNFormed.

You can start by checking out our Learn section and signing up for updates under Contact Us. Be sure to check back frequently for new articles and iNFormation.

Look for webinars, symposiums and other educational opportunities to help make you a true ambassador for the cause.

Learn About NF

Wear the Word

Wear the word on your body, your car, your wrist, your laptop…where ever you can.  Hand out information about NF whenever you can,

Help the world to see it and recognize it. We have merchandise available at our store that includes clothing, wristband as well as business cards and brochure.

We are always looking for new and creative ways to spread the word. Let us know your ideas!

Awareness Store

The Effect of Awareness

Improved Care

  • Creates more informed, experienced physicians and increases access to appropriate therapy and better care.
  • Helps people with NF to better understand the disorder so that they can better care for themselves and seek out appropriate care providers.
  • Leads to more understanding and empathy for those who have to go on disability.

Better Quality of Life

  • More understanding of what living with NF is allows the public to help people with NF live fuller, happier lives, and minimize the burden of their NF. People with NF often hide their disease from friends and family, and when they cannot do that anymore they disappear from society altogether. Public ignorance makes those with NF feel misunderstood, discriminated against, and marginalized, leading to loneliness, depression and decrease in quality of life, all of which further exacerbate the negative impacts of NF.
  • Employment can sometimes be a problem for people with NF. As they get fired or pushed into retirement prematurely, often soon after diagnosis, they could potentially loose their incomes and end up alone and isolated. A better understanding of NF would help employers learn how they can use people with NF, which will help them as well as the broader society, by keeping those with NF active in the economy.

More Research

  • Leads to more public support for NF research and more funding for research and other support programs.
  • Moves NF higher on government agendas – Governments are the ones who can provide easier, cheaper access to treatment, more doctors, improved diagnosis, and more support services.
  • Focusing exclusively on research limits support to the existing pool of people who already understand the case, so more research does not unfortunately lead to increased awareness.

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