The I Have IIH Foundation

Organized by:
The I Have IIH Foundation

Event(s) Summary

Number of Events Organized During Brain Awareness Week:




Type of Events Held:

  • Other
  • Other: Social Media Participation

Target Audiences:

  • General Public
  • Patients & Caregivers
  • Professionals
  • University students
  • Other: Young Adults 16-19

Approximate Number of People Reached:


Details of Major Brain Awareness Week Events/Activities:

Social Media Engagement on Twitter Facebook Instagram Google Plus LinkedIn We raised awareness for Idiopathic Intracranial Hypertension and it’s neurological effects in relation to cognisance, and the similarities to that of a brain tumour. Many people are still unaware of the IIH and that it can affect anyone of any age, body type or gender, or that it can not be screened for like some other neurological diseases and conditions. We have found that social media is a good toll for information and awareness, given the trend for people to share and interact this way. As we usually have an open house event with social media being a secondary event, we were pleased that we still had sizeable interest.

Event Planning & Publicity

Publicity Methods Used:

  • Website
  • Social Media

Which of These Publicity Methods Was The Most Successful?

Web site and Social Media seem to be the most effective, as more people seem to be accessing the internet more, especially connecting to social media.


Of the Dana Foundation publications/resources distributed at your event(s), if any, please indicate the three most popular. Please choose up to three. If "other," please indicate below:

  • It’s Mindboggling!
  • More Mindbogglers!
  • Staying Sharp: Successful Aging and the Brain

What downloadable materials from the Foundation did you use for your events?

  • Puzzles: Mindboggling Series
  • Puzzles: BAW Favorites

What other downloadable materials would you like the Foundation to provide?

  • Fact Sheets
  • Activities/Experiments
  • New Puzzles/Games
  • New Coloring Sheets

Which BAW graphic materials did you use in publicizing your events?

  • BAW Logos
  • BAW Web site banner

Feedback & Keys to Success

How do you feel BAW participation benefited your organization and the local community?

As more awareness was raised it generated requests for our IIH Information Booklets, as well as generating more memberships in our Support Forums. On the whole we had another successful year.

Please share any suggestions or lessons learned that may help others plan future events:

As well as planning public events such as lecturers, open house etc., they do work better with social media involvement. We usually like to run our events in tandem with social media but were unable to this year. While social media is a necessary tool for any direct communication with the public, more can be achieved with a side by side event.

Did/do you like our Facebook page?


Was the information provided on Facebook useful?

We always find the information provided most helpful.

Contact Information

BAW Website:

Contact Name:

Heidi Wilson

Contact Phone:

+44 0114 2692931

Contact Email:

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