The Hell Hole Cares

Okay, let's drop the BS. This is a straight up appeal for charitable money. There are a number of charites out there that are orphans. They do not get the big bucks. They do not have thousands of people with their particular illness. They may not have the numbers, but they have people in need who cannot get help. Below is the link to one that is rather personal because the Baron's wife is one of the blessed few who have it. We are not asking that you support this charity. We are only hoping.

Central Nervous System Vasculitis Foundation
Dani and I have been married seven years. For the last four years she has been slowly dying. It started with a series of massive headaches that made her go blind while they lasted. Then a stroke put her into a four day coma from which she woke with the ability of a seven-year-old with alzheimers. After a year and a half of struggling, she brought herself back to eighty-five percent of who she was befoe, but Dani is still dying because there is no cure. There is only treatment for this disease that attacks the brain and spinal column. If the disease does not kill her, the medications keeping her alive will. Her disease has about nine hundred known cases in the world, though there are probably many more because the first indication most people have is when they have a stoke and die. Nine hundred people. That isn't many, but because it is an orphan disease there is no money for them, few funds for research, and little help. My wife, along with a number of other victims, did not like this. They started a non-proffit foundation to promote education, to help other patients, and to build a base of doctors who know how to treat these rare patients. They have helped people get meds. They have told people where the closest doctors are who can actually help them, and then got them early appointments because a wait could mean their deaths. They have paid to repair cars so a patient can go to a doctor appointment, and they have helped pay funeral costs for those who have fallen. This disease is terrible. It is expensive and debilitating and it destroys families. After three years of effort, the foundation is listed in NORD, the North American Rare Disease registry. It has contacts with John Hopkins, Mayo, the Cleveland Clinic, as well as others. We recieve calls from people who have other vascular diseases because the foundation often knows where they need to go and who they need to see to get help. This is pretty good for something run out of home offices with next to no funds. Though she has improved mentally since her first attack, my wife is still dying. Her bone mass is dissapearing. Her back is spasming. She suffers siezures and mini strokes. She is having a major operation at the end of August, but she is not giving up, though she has reached the point where she must step down as the president of the foundation. Still, she wants to make a difference to the world before she goes. She wants the foundation she helped start to continue on, strong, healthy, able to give help when it is needed. Can you help her dream continue.