Monday, September 8, 2008

Complete Success Feels Good

Well first, before I get too carried away talking about how great the gallery opening for "Life - Through the Eyes of a Child Living With Neuroblastoma." was, I want to remind everyone of an upcoming webinar tomorrow. The CNCF is presenting an informational session on the use of Sodium Thiosulfate to prevent hearing loss from Cisplatin. Dr. David Freyer from CHLA will be presenting all of the research that has lead up to a new study which is aimed at curbing the hearing loss from Cisplatin. For those of you that don't know this is exactly the type of hearing loss that Sydney experienced and the reason that she wears hearing aids. I think this is incredibly valuable information for parents of children that have been recently diagnosed with neuroblastoma. For many of them that are so close to diagnosis however, they have not had the experience or exposure to know what to ask. It is for this reason that I am asking parents of children that may already be past this point to participate in this discussion. With hindsight we may be much more prepared to ask the questions that they may not be thinking of. It is for this reason I am asking as many people to participate in this online seminar as possible to help these families find the answers that they may not be prepared to ask. The online seminar will consist of 2 components, a conference call and a web browser so that you can see the slides. It will take place at 12:00 PM central tomorrow, Tuesday, September 9th, 2008. If you are a parent of a child with neuroblastoma please consider participating so that we can help these other families. You can sign up here:

Now, onto the gallery opening. In all due honesty, I don't think I could have asked for more. The museum was jam packed with people. There were many times throughout the night when I could not navigate back down the hall. I have heard estimates from 200 to 500 people in attendance but the only real indication that I have is the fact that we went through 400 plates. (I didn't even use one!) Somehow, I was also denied a sandwich from any one of the seven trays that were provided by Jason's Deli. I was blown away - and hungry! Wine Styles was so moved by the event that the owner even decided to donate all of the wine for free. If you get a chance to stop by the Wine Styles in Montgomery Plaza please remember to thank her for me. I also received a personal surprise of my own. Rahr Beer donated all of the beer and I discovered that I had a new favorite. Who would have thought? Boy, was that good.

The night also brought several members of the press. That was a nice addition to our evening. The night had not even begun when several of us were already being miked up and interviewed. I knew of atleast one cable news channel that was in attendence and met with several print reporters. Although I am still yet to see much of the media on TV or in print I was happy to see them there. It could only help with the awareness.

The kiddos also had a blast. The autograph center went over wonderfully. The kids had so much fun being stars for the evening. Many of them had as many as 60 autographs to sign. My hands were getting tired just watching them. In the end, however, it was a great time. It was so good to see so many of them feeling so well.

For those of you who could not attend, the pictures are available on the Fort Worth Community Arts Center website at

It was a purposeful start to Pediatric Cancer Awareness Month.

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