Thursday, August 14, 2008

We Need Help

Obviously we are going to be reaching out to friends and families for help in many ways - but currently what we need is local children representing various organizations/diseases to be photographed for 'The Project' website, web community and portal for Rare Diseases.

Please reach out to all those that you know who are somewhat local to Orange County, CA that would be willing to join us 1-day within the next month for a photo shoot. We promise we will make it fun.

Please have them contact Nicole Boice for more information, date, times, directions, etc. 949.305.8656!

Thanks much!

Wednesday, August 6, 2008

We are ROCKIN'

Everyday seems to provide us with some new successes, contacts, people interested in helping. We feel so fortunate that so many are willing to go above and beyond.

Website Status:

We have developed the look and feel of the site (under construction), and are hoping for a soft launch in the next 2 months. This is critical because the site is going to be a key communication hub and educational resource for those families/charities with/supporting kids with rare diseases.


I realize now that the Europeans are much farther along creating a collaborative environment, and we hope to be able to partner with some of those organizations that have put so much money, time and resources in building what they have. No need to re-create the wheel.

First hires:

I am trying to recruit a web editor/journalist whom the industry has tremendous respect for. This person would bring so much to our web efforts; creating a portal with news, custom articles, with the potential of building newsletters, quarterly publications all with the goal of helping connect families, physicians and the charities that support them.

We have big plans. And we are well underway!