A protocol, that's ALL!!!" is our Mantra.
The mission of The Arachnoid Cyst Foundation is to have "a protocol, that's all" established so that we, the Arachnoidites, do not go into a doctor's office and are told "it's all in your head" ever again. This is a web of information and stories of patients and their struggles in living with an Arachnoid Cyst. Find support among others affected by this long term systemic, auto immune degenerative Central Nervous System Disease with no known cure, not enough treatment, and little research into the cascading difficulties this so-called "benign" condition evolves.
Our goal is to provide and improve online communication resources. Through these and other efforts, we are building a global community of People whose lives are affected by Arachnoid Cysts. We have worked diligently with THE Brain Trust in organizing our efforts into becoming a budding foundation, and this has offered invaluable resources for our community.
We have four program areas that support our mission of a healing . We are promoting social change.
1. Offer Direct Phone Support for those going through a crisis or needing to understand their MRIs, which drugs work with other people, and having direct contact with someone else suffering from this rare disease.
2. Creating, Maintaining and Improving online communication resources related to brain tumors and related conditions including: support groups, informational.
3. Organizing face-to-face networking events to augment our online communities by promoting socializing, fun, support, spirituality, information and advocacy. These gatherings create lasting memories that help patient-survivors and caregivers realize that it is their priceless lives, and not brain tumors, that define them.
4. Researching through the many articles that have been published trying to make sense of what happens to people that have this disease.
5. Be sentient of the stages we all face as we make the rites of passages, even though we feel we are never going to make it through.
6. Raising Public Awareness of the issues and brain tumor patients' survivors' webpages, by exchanging our stories of what we have all encountered.To you they may seem intense, but this is the one aspect of our lives we are ALWAYS undergoing.