Reaching Beyond the Clouds

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.

Yesterday several girls from Girl Scott Troop 499 brought me some Valentine’s Day cards that they had made for me. So, I took the cards to the summit with me to show how much I liked them.

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.