Can you pledge to donate one penny for every vertical foot I climb? The summit of Mt. Everest is 29,035 feet. Based on a-penny-per-foot donation, if I make it to the summit your donation to the Vasculitis Foundation would be $290.35. If for some reason I only make it to a lower point, say Camp 3, your donation would be based on that elevation.
What do you think!?! It will be fun following my summit climb and throwing pennies into a donation pot!
Today we summited Mt. Baldy and proudly displayed the Vasculitis Foundation’s t-shirt. As you can see: it was a beautiful today to be at 10,064 feet.
Today I found out that my friend has advanced Lou Gehrig’s disease. This is just another example of how tragic these diseases can be: no timely diagnoses ….. no time! Best of luck and my hopes are with you – no matter where you want to go.
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.