September 30, 2008 --

I remember reading a post about hosting a walk to raise awareness for chiari malformation!!! I was so excited I could barely contain myself! I instantly wrote Rick at Conquer Chiari. I knew immediately I wanted to be a part of it. I was happy to see an organization taking the inniative to move forward and march across America, sweeping the Nation with awareness. I was ready, as I have spent many years fed up with misdiagnosis because my doctors werent as educated in this particular disease! I wanted the world to hear about Chiari and I was ready to have my voice heard!

I knew exactly where to have the walk. The perfect spot where hundreds of folks go for their daily jaunt. It was set, a great spot for a great cause, now it was time for affirmative action :) I couldnt wait to tell my mom and my friends!! I knew they would be there and would'nt miss it! I was going to make a difference. Millions of thoughts were racing through my head and they just wouldnt stop. I was so pumped to raise my voice and make a difference. If I could make life a little bit easier for the next person, it would make me feel great! However, if I could help more then one person then I would feel better! My mission was clear. I emailed the newspaper a thousand times,contacted Radio stations to get some air time. I talked with every person I came into contact! I was psyched. I finally got an article published in the Big local Newspaper. I was stunned by the amount of responses that came from that one story!!! I was thrilled. I had people calling me crying because they were just happy to have someone to talk to, they werent alone anymore. It made me feel happy that I could be there with them because most of us know its no fun struggling with this disease alone! I landed some air time to on a neat show called perspectives. Again, some lives were touched and friendships have been gained.

Time was flying by and the day of the walk was approaching. I feel so very fortunate to have been a part of this and for all the great friends that I have made from the Conquer Chiari Family to the fighters in Maine!
I couldn't have been any happier waking up to a beautiful, Fall Sunny Day! Things were looking good. It was nearing 11 and outside my front door was a brigade of friends and family all raring and ready to go to the walk site. We all decorated our vehicles with "Follow me to the Chiari Walk!" We paraded down the highway, and to the site horns honking and people pumped to be there! It was only 5 seconds after the tent was put up that lines were forming! I was shocked at the outcome! T-shirts were sold out in matters of minutes- There were people from all over Maine, NH and a couple from Mass. I was pleased to say the least- We all got together for a group photo minus 15-20 people. I smiled in awe and spoke with the crowd telling them how proud I was at that particular moment- I knew we were making a difference together- before we all took off to walk, I asked the crowd for those who are fighting Chiari and Syringomyelia to come forward and all Eleven of us posed for a group shot. The cutest story of all was this friend of mine wanted to instill the importance of helping others to her twin girls- She explained Chiari to her 4 year old twins and on their own they went to their piggy bank and brought their mom 2 quarters to give to The Conquer Chiari walk. This will help people like Erin, they said. It brought tears to my eyes because those little girls have such big hearts! I have to say that this walk has changed my life

-- Erin Ruiz

Return To Table of Contents