March 11, 2007

Tuberous Sclerosis Lobbying Effort

Last week Rob and I went to Capitol Hill to meet with four different congressional offices. We didn't meet with any of the congressmen, but we met with staffers for Jim Moran, Virgil Goode, Eric Cantor and Bobby Scott. The appointments seemed to go well and we are hoping the congressmen will sign their names to a letter going to the appropriations committee asking for increased funding for TSC research. There have been great medical advances made to better understand how to treat Tuberous Sclerosis patients, but there is still a long, long way to go.

After the day on the hill we went to a charity dinner for Tuberous Sclerosis that was organized by the TS Alliance. The dinner was impressively organized and every aspect of the event (location, food, wine, etc.) was donated to the cause so 100% of the money raised from ticket sales, silent auction items and live auction items goes directly to the charity. My mother sent two quilts, one she made and one made by her craft group and Rob donated two framed prints from his trip to Africa last summer. They were all in the silent auction and at the end of the night, our family alone had raised $1300 for the TS Alliance!

The dinner was also a great opportunity to talk with other families effected by TSC and doctors who specialize in the treatment of Tuberous Sclerosis. I was a great experience and we're looking forward to doing it all over again next year.

There is only one thing I would change -- I sprained my ankle the weekend before and I alternated between crutches and a wheelchair the entire day. I hope I never repeat that!


Mary said...

I had so much fun with Aria & Evan while the grownups were out "getting our government priorities in order"! I'm so very glad that we live close enough to each other that I can be a part of their growing up. Those two are quite some kids!

I really appreciated their delight and affection. We had so much fun playing and reading and talking together. I enjoyed my chance to meet some of Aria's school friends.

I'm amazed at how brilliant both of those two are! Aria read me a "Little Bear" story I brought with me-not one that she had read before! We had an involved conversation about math concepts also.
Evan demonstrates amazing language skills for a three-year-old,and had to join in our counting activities at the lunch table. One kindergarten readiness measure is being able to count to twenty-he's got that nailed! And is almost there is Spanish also.
Their teachers are going to be challenged to keep them challenged in school. Must be the great parenting Rob & Lisa are giving them!

Love you all!

Mama Lisa said...


Thank you sooo much for watching the kids, I don't know how we would have accomplished everything without you!

I'm glad you had a good time with Aria and Evan--they had a great time hanging out with you too. I think you're right about teachers being challenged by them, we certainly are. I didn't think I'd have to research to answer their questions until they were in school, but I'm always up for a good challenge--let's just hope the school system feels the same way!