Archive | Uncategorized RSS feed for this section

Home Sweet Home

15 Jul


Since last I posted:

We attended a wedding in Mount Shasta, California
We road tripped 10 hours each way to Eugene, Oregon
We flew to Minneapolis, Minnesota for the JSRDF conference

Somewhere in all that, TigerOne had the stomach flu, sprouted his first 4 teeth, and developed a fascination with giving the thumbs up.

It’s been a wild, wonderful few weeks. I have so much to share.

But first? I need a nap.


We Are Going to MSP!

4 Jun

20130603-215731.jpgOh my goodness, YOU GUYS! A mere 6 hours after launching our fundraising campaign, we are fully funded! TigerOne and I are going to the 2013 JSRDF Conference in MSP!!! I am feeling extremely exclamatory!!!!! THANK YOU, THANK YOU, THANK YOU. My family is extremely humbled and overwhelmed by your generosity.

Please note that anything donated beyond our goal will be given to the Joubert Syndrome & Related Disorders Foundation so that they can keep on doing the wonderful work that they do. The online campaign will stay open until after we have the benefit show next month. It’s going to be a fun party!

Looking forward to keeping you all updated on our adventure to the Land of 10,000 Lakes.

Send TigerOne to MSP

3 Jun

Hi friends! I’ve launched a fundraising campaign to take TigerOne to the Joubert Syndrome & Related Disorders Foundation 2013 conference in Minneapolis next month. I’m making jam! I’m mailing postcards! It’s fun times! Please click the image below for more details.


1 World, 1 Diagnosis

2 May
JS Map

Concept by Elizabeth Walker Joshi, designed by Ross at LTL Prints

This is a graphic that was created for the 2013 Joubert Syndrome conference taking place this summer. The idea of this project is to show that Joubert Syndrome can affect children in any part of the world, of any culture or ethnic background. Look at all of these sweet faces! A whole map filled with rare and wonderful kids. Can you spot the tiny TigerOne in blue?