Reaching Beyond the Clouds

Wow: ABC did a great job with the story and here is the link to view it on-line news site. Please wait for it to load – it takes a few seconds. Thanks ABC!

The Southern California ABC news will be running my story tonight (Dec 23rd) at 5PM Pacific time. If you cannot view it on TV it should be available through their on-line news site.

California State University, Fullerton has just released my story to the media. You can go to “In the News” page under My Journey to view the story. I hope this helps draw more attention to need for rare disease awareness!

The more I research other Wegener’s patients’ stories: the more I see the need to raise rare-disease awareness. Looking at story after story: I see definite similarities. Unfortunately, one of the similarities is that many people are not diagnosed while the disease damages their bodies to the extent that finally (after years or if they are lucky) someone puts the pieces together and treatment can begin. The doctors need to have access to informational resources enabling them to match the symptoms with the disease. We need to support more research so that the doctors have reliable resources to help them help their patients.