On their way to raise awareness......

A great send-off from the Worcester Academy students, teachers, parents, friends, and family. Many signs, hugs, and well wishes as they headed off. I won't post many pictures here as Stephen will be posting on the http://www.chrisjourney.com/ site with his daily updates.

Chris, Stephen, and Aislinn at the party. It meant a great deal to us to see such a great turnout.

Clicking on the picture should give a better view.

More Awareness for Amyloidosis

As I have posted here earlier, one of the most terrible things about amyloidosis is that it goes undiagnosed in so many people; they suffer the terrible consequences due to the lack of awareness. Chris was made aware from the pure luck of reading the newspaper article written about Jennifer Gershman, who was diagnosed a year before Chris and was also treated at Boston Medical. Jennifer promoted awareness and Stephen has continued the march with his east cost bike ride from Florida to Boston this month. Interestingly, this project that he and Aislinn Shea are doing for their senior project has benefited from some "viral marketing". That basically means that the story is spreading through word of mouth or other media without any organized or intended approach.

Today was a good example. The NBC affiliate in Boston, WBZ, interviewed Stephen and Chris today and ran a story on the news this evening. Here is the link:
http://wbztv.com/video/?id=73734@wbz.dayport.com

Here is their web site posting:
http://wbztv.com/health/east.coast.ride.2.950441.html

Also, the paper in Worcester picked up the story and ran it in today's Telegram and Gazette:
http://www.telegram.com/article/20090304/NEWS/903040449/1011

Chris is a bit worried that this is getting bigger than she wanted, but if one person is made aware or one doctor thinks of testing for this, then it is worth it all.

Stephen and Aislinn leave tomorrow for Florida from Worcester Academy. I'll try to post some pictures if at all possible on Friday.

A good and quick explanation promoting awareness

The Amyloidosis Foundation has sponsored a 5 minute video that was developed to explain Amyloidosis to physicians. It gets a little technical, but the key elements are understandable. Chris has Primary AL type, and you can hear some frightening statistics about life expectancy and number of sufferers. As the video points out, the single most important factor in successful treatment is early diagnosis. Yet diagnosis is unlikely given the lack of awareness by the medical community. As stated, often the patient suffers from many different symptoms and numerous tests are often performed without any clear pointer. In the case of amyloidosis, the only real test is a fat biopsy with a red congo stain.

Here is the url for the video:
http://vimeo.com/3358025


In the meantime, Chris is doing well but has had a very bad cold and some GI issues in the last week. Unfortunately we are learning that we just can't grab over the counter medicines to treat her symptoms as everything needs to be analyzed against the Coumadin. This slows everything down and she suffers a bit longer as a result. We want her to be as healthy as possible next week as we go in for the 3 days of evaluation.

Stephen continues to train hard for his ride. He and Aislinn leave on Thursday directly from school and will arrive in Jacksonville Friday evening with the ride north starting Saturday morning from the Mayo Clinic. They are pretty well organized, but I am sure they will have some bumps in the road. His plan is to update his blog each evening with a quick status of his location, his adventures, and his progress promoting awareness. He remains amazed as to the outpouring of support for his ride to promote awareness.

Again, thanks to all!!!