Well, California Assembly Members Hill and Huffman introduced the bill but it did not pass. So, California has not recognized Rare Disease Day (which was last Sunday, Feb 28th) but there is always next year to try again.
On the brighter side, I am 29 days from leaving for Mt. Everest!
Since late October I have been writing letters to the Governor, Maria Shiver, the senators, and assembly in an attempt to get California to recognise February 28 th as Rare Disease Day. At the same time others have been helping through media releases and personal contacts: All trying to get some one’s attention at the state level and it appears to have worked!
Asm. Jerry Hill (D-San Mateo) has introduced a California Health Institute sponsored resolution recognizing Rare Disease Day in California. The measure, Assembly Concurrent Resolution 117, will be heard in Asm. Rules on 2/18, and will be presented on the floor of the Assembly the week of 2/22.
Raise Your Hand for Rare Disease Research!
Please go to my Facebook and click on this link Lundbeck Inc will donate $1—up to a total of $10,000—to NORD’s general research fund.
If you have Facebook, please send the link to your friends – thank you for helping!
I am working on getting a link for this page – maybe by tomorrow.
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).