Friday, February 15, 2013

Join the Wall of Hope With Me For Rare Disease Day!

I have Intracranial Hypertension.  For me, my increased cerebrospinal pressure causes constant headaches which move to extreme levels, neck and back issues from lumbar punctures and the pressure itself and also vision issues (including some loss).  I will be taking a picture with one of the patient flyers for the Wall of Hope as much as I hate pictures.  I ask that my family and friends do the same with the family and friends flyer.  Take the picture then email it to IHRF.  Maybe make it your profile picture until Rare Disease Day on the 28th.  Celebrate RDD

from the Intracranial Hypertension Research Foundation (IHRF) website

Join the Wall of Hope For Rare Disease Day, Feb.28

Intracranial hypertension (IH) is an invisible disorder; people with IH often look fine, on the outside, but are, in fact, suffering terribly. It also is an illness that can imagestrike anyone. The Foundation originally created the Wall of Hope on IHRF’s Facebook page in 2011 as part of the effort to raise public awareness of intracranial
hypertension and rare diseases for Rare Disease Day. It proved so popular that we are once again opening the Wall of Hope for your pictures for Rare Disease Day- February 28, 2013. Please join us in this grass-roots campaign to literally give IH and rare diseases a face—yours!
Are you on Facebook?
From February 15-28, we are asking you to take a picture of yourself with this IH RDD Awareness flyer:
IH RDD Flyer for Patients
IH RDD Flyer for Family and Friends

(If you are using the Family and Friend flyer, a space has been left for you to add your family or friend relationship, i.e. “My mom is the face of intracranial hypertension.”)
After you take the picture, please send your photo as an attachment to with "Wall of Hope" in your subject line. We will be posting the photos to our Facebook page, so we can create a Wall of Hope album. We also hope that you will use it for your profile photo during February 2013 as a way to continue to spread awareness.
Thanks for your help in raising awareness of IH, rare diseases and Rare Disease Day!

Please note: IHRF reserves the right to select or reject any picture submitted to the Wall of Hope. To be considered for the Wall of Hope, pictures must include the the IH RDD Awareness flyer.  Pictures with any other information will not be accepted. When you submit a picture to the Wall of Hope, you grant IHRF permission to use your Wall of Hope photo in any Foundation-related marketing, educational or fundraising campaign or material.

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