PXE Awareness

Volume 18, Issue 3 November 2012


President's Message


Frances BenhamDo you like our colorful cover? Our fall foliage is so beautiful that we wanted to share it with all of you. Will Hawley, my new assistant and a skilled photographer, made the picture and designed our cover.

As you know, NAPE worked with the ACLU to stop the patenting of human genes. Over 30 medical and patient advocacy groups opposed the work of Meriad Genetics and one advocacy group. A lower court ruled against us; we appealed to the Supreme Court, which recently ruled in another case in support of our position. Again the lower court ruled against us, and stated that those who disagreed should seek legislation. Instead, the ACLU, with all its supporting groups including NAPE, asked the Supreme Court to review the ruling. We now are waiting to hear from the Supreme Court. This case not only concerns us, but is important to most Americans. We need to talk with family and friends about it. All those I have approached have expressed surprise and concern that our genes can be patented. It simply is wrong, and eventually we will succeed in making the case if we share the issue with all those we know.

We have decided that there is just not enough PXE news to warrant four PXE Awareness issues per year. This is our last issue for 2012. If important news develops a special issue will be mailed to our readers.

The subject of this issue is common eye problems. None of them is related to PXE. However, each is closely related to aging, and it is important that we be well informed about these problems, and make sure we are caring for ourselves to avoid their onset from an early age. Doing so is not that hard if we start early. The longer we wait to begin, the harder the task. Please read our articles and decide what, if anything, you can do to support your own good health. You can impact your longevity, your sense of well-being, and perhaps even your vision.