It started off with the Walk n Wheel in front of the Latham Hotel at 17th and Walnut. We gathered together and walked all the way to the Philadelphia Art Museum, banner in hand and chanting, “Join the crusade, raise awareness-Arachnoid cyst awareness!” The best moment had to be when a woman shouted, “How many people are diagnosed with this thing?” The idea was to get attention, and I feel we did just that!

Later that night 50 of our members along with world renowned neurosurgeon, Dr Leslie Sutton, psychiatrist Dr Clifford Kuhn and 5 nurses, met in the White Dog Cafe, just steps away from the hospitals University of Penn and Children’s Hospital of Philadelphia. There we had 6 presentations–two from doctors, two from family members of arachnoid cyst patients and two from arachnoid cyst patients themselves, hoping this would cover all sides of what it is like to deal with an arachnoid cyst. Dr Leslie Sutton opened the conference with his presentation discussing what an arachnoid cyst really is and the types of surgical intervention that are needed. Next we had Helena, who had traveled all the way from London to be there, discuss what it is like dealing with the National Health System in the UK, and how the NHS have not acknowledged or treated her arachnoid cysts. We then were moved to tears by Genevieve’s video presentation about her 6 year old son Jack’s journey so far with his arachnoid cyst. Later we had author Jana Cox show clips from her award winning play, “Dream Child”, Mark Collings who came to discuss visual problems associated with arachnoid cysts and we ended with Dr Clifford Kuhn who discussed how to find the humor in the midst of disaster.

Did we have hundreds and hundreds of attendees? No, but I think good things come in small packages, and the intent was to get people thinking and talking about arachnoid cysts, and that is what we did. Our event space was sold out and we even had extra people standing throughout at the back by the door. The wait staff were even listening, and throughout the evening other diners at the White Dog came by and listened–we definitely raised some awareness on November 6th! To see people on the edge of their seat with their eyes glued to the presenters inspired hope–hope that more people will one day stop and listen!

Here is a slideshow of some of the images from the Walk n Wheel event, and a link to the images on our ACA Network.

We will be announcing the 2011 Arachnoid Cyst Awareness Conference soon! What I can tell you so far is it will be in Utah in September!!!!

http://arachnoidcyst1.com
http://arachnoidcystnetwork.com/acanetwork/
http://arachnoidcysttv.com
http://arachnoidcystpetition.com