The day before I was to go on radio to talk about World Retinoblastoma Awareness Week and my book, I get an email from the producer saying it is off.
It’s full of sincere apologies – the co-host has been called away to more important business etc – but the real message is clear. We, the survivors of a rare condition who want to raise public awareness and enhance early detection to save both life and sight, are but small fish in the big scheme of things. It is sad, but true.
One thing it has taught me is never to rely on one media source to publicise a major event such as Retinoblastoma Awareness Week. Next time, I will target the local print media and perhaps even more than one radio station.
A contact in America emailed me to ask what was happening in Australia with respect to RB week. Now I have to say, “nothing”. I haven’t heard of any other form of publicity. In a way, it is symbolic of the attitude the Australian medical profession has to retinoblastoma. If you ask an oncologist, they will say it is such a rare cancer that no-one is doing any research on it over here.
It may be rare, but I certainly hear of many new cases in Perth.
So next time, I will be ready with my media campaign to raise awareness to the incidence of retinoblastoma and what needs to happen, both in developed and under-developed countries.
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Janet-
This is an attempt to send you a message to tell you about an effort by the American Optometric Association to try to change the mindset on the need for early, comprehensive eye and vision care for children, beginning with the infant. Our public health program, InfantSEE,offers a full comprehensive vision assessment of any child in the U.S. at no charge. We have over 7500 optometrists in the AOA offering this service. Included in this assessment is a highly recommended dilated fundus examination.
Although we look for a myriad of vision problems, the dilated fundus exam and attention to RB is a very important part of our program. One of our doctors in Arizona found a retinoblastoma tumor on his first InfantSEE assessment.
As your blogs have indicated, there has been resistance to our program as searching for a disease too rare to warrant merit. We disagree. Our opinion is that there are many eye and vision issues that justify the need for the InfantSEE assessment, and although rare, we believe the devastating effects of RB justify us to include the dilated fundus exam and close attention to the health of the retina.
Please feel free to contact me if you want to learn more about our efforts via the InfantSEE program, or visit http://www.infantsee.org.
Jim
James Spangler, OD
InfantSEE Committee Member, AOA
213 West Third Avenue
Warren, PA 16365
Hi Jim,
Sorry for the delay in responding. I’ve recently changed my setup and hadn’t been notified that a comment was awaiting approval.
The project you outlined is very exciting and encouraging. And has proved the need for such a service already by a RB tumour being found in the first infant examined. I’d love to know more about what you do so that I can write a blog about it.
Thanks for your comment.
Janet
Hi Janet. Sorry I did not notice your reply sooner. InfantSEE is growing daily – our office sees about a baby a day! More offices are becoming more visible in offering this no-charge assessment for babies. We (InfantSEE) have now been added as a resource for primary vision care services (identifying the tumor) to the Retinoblastoma International website (www.retinoblastoma.net). We would love to see efforts work in harmony for better results.
Jim