The more I research other Wegener’s patients’ stories: the more I see the need to raise rare-disease awareness. Looking at story after story: I see definite similarities. Unfortunately, one of the similarities is that many people are not diagnosed while the disease damages their bodies to the extent that finally (after years or if they are lucky) someone puts the pieces together and treatment can begin. The doctors need to have access to informational resources enabling them to match the symptoms with the disease. We need to support more research so that the doctors have reliable resources to help them help their patients.
I am still waiting to hear from the Governor’s office about California recognizing Rare Disease Day.
I would also like to mention that the Vasculitis Foundation has declared April 25 to May 1, 2010 as Vasculitis Awareness Week. This is good timing because I will be able to post (and maybe attach a picture) from Mt. Everest base camp during these days (unless we are higher up training).
I have discovered that California also does not recognize Vasculitis Awareness Week: 2010 is April 25 thru May 1. This week will occur during my climb on Mt. Everest. It will be great to post some pictures on this blog during Awareness Week from Everest! For now, I have to start working on getting California to recognize the program.
Okay, I received an e-mail form the Governor’s Office giving me instructions on how to go about getting the Governor to recognize Rare Disease Day. So, I am off to write more letters!
In an attempt to get California to recognize Rare Disease Awareness Day, I have been e-mailing my senators and assembly person. I have also e-mailed the Governor and the First Lady. I find it hard to believe that I might be climbing the highest mountain in the world to raise rare disease awareness and show people how important it is to live life: but the state I live in and work for does not (as of now) participate in this cause. I will continue my efforts to bring the importance of this proclamation to the Governor’s attention.
I wanted to thank all of you have are helping with this journey! Each of you will be able to follow the climb as it happens next Spring. I will be able to post comments and pictures via satellite.
I have used my Frequent Flyer Miles to purchase my LAX to Kathmandu airline ticket! Things are coming together.
I just found out that of the 39 states which recognized Rare Disease Awareness day in 2009, California (my state) was not one of them! Within 18 hours, I had a letter written and mailed to both Governor Schwarzenegger and the First Lady Maria Shriver asking them to declare February 28, 2010, Rare Disease Day in California.