Reaching Beyond the Clouds

My fund-raising event through the Vasculitis Foundation (VF) is not scheduled to start until April 1st however people have already made donations and I wanted to thank them. The money will go to much needed research and support services. I have to say that I am not at all comfortable with the media coverage, but I do realize that I have this amazing chance to raise awareness and hopefully money for the VF. I have been told that Diane Sawyer is interested in covering my climb on ABC National Network: I will provide more details as I get them.

P.S. I have to say that the media  people I have dealt with have been very nice.

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.