Who and what Zipperheads for Chiari is.

Zipperheads for Chiari has over 1600 people on our face book page… WOW, that is amazing. I want to take a moment and welcome all our new Chiari family to our page and thank the ones that have been with us for so long. We are a little different from the rest out there and wanted to take a moment and share what we are and what we do. We opened up a Parent page on Facebook. it is called Parent page Zipperheads for Chiari.

   My name is Heather and I have Chiari, I had surgery in 2009 and still battle with this disease along with a brain aneurysm. When I was diagnosed I wanted a positive support group. I felt that the more I learned and read about Chiari the more it was not the same for everyone and the more scared I was. So I “was” going to start a foundation but felt that a support group was more needed. I am not one of the lucky ones. After my surgery I have seizures, I can not work and I am on SSI disability. I have many days that I am still ill and when that happens my sister Carrie helps me on Zipperheads for Chiari. She has been so wonderful and supportive. (Thanks sis, love ya) I have many other symptoms. I do feel the surgery helped but I was very progressive and this is who I am.
   In my life I have been through a lot, and with that being said I have found that through positive thinking life can get better. It is not easy and I do fall down the negative spy roll sometimes, but being a mom and seeing what that does to my children I make my self stop. I have Chiari and that sucks but I am alive and that is wonderful because I want to live. One of the hard things with Chiari is the depression and feeling alone. I felt it was very important that, that be our goal is to welcome all that not only has Chiari but is effected by this disease. So our support group is not only for Chiarians but the families and loved ones who are also effected by it. Chiari does not just happen to the Chiarian it happens to everyone around them.
   I am a firm believer in supporting with all the love in your heart and not asking for anything in return. There is NO hidden agenda here at Zipperheads. We are exactly what we say we are. We do NOT deal with any money and will not except any money. When people come and want to donate we refer then to the foundations on our website page.
   We will not side with “ANY” foundation because we support all of them. We have a goal for our support group and a big goal for the community. The goal for our support group is to support and love all that Chiari effects. Help them through the hard times and hopefully help them move forward in there own life with a positive outlook. We don’t want to scare any one but we want to deliver the correct information about Chiari and what options we all have for a better life. Our bigger goal is for the Chiari community to come together and not fight with each other. We need to stand together for the world to hear us and help us fight this disease.
  
   In order to fallow through with our goals we will not allow any negative, false or mean post’s. We will remove them. Chiari can effects anyone. Chiari does not discriminate and we will not either. We respect all of you and welcome you to our page please be respectful and help us move forward as a community.

We will always support with love and be here to help in any way we can.