President's Message

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Dear NAPE Friends,   2007 was fast-paced and exciting in NAPE’s office as we served more PXE patients than in any previous year, and we were busy trying to keep up with scientific and medical discovery announcements. Our Board voted to review with the physicians most closely associated with NAPE the question of dietary calcium intake. The scientific literature is limited on this topic, which led us to focus on the advice of practicing physicians who are aware of the great increase in information about the role of calcium in the body. Please see the article on calcium in this issue. Board member Sally Dawoud has worked closely with Dr. Leanne Dahlgren and her associates on the issue of pregnancy for women with PXE. Dr. Dahlgren continues to be quite interested in working with women who are pregnant or who have delivered a child. We have agreed to provide contact information for a questionnaire which is available on Dr. Dahlgren’s website. We hope that many women will take advantage of the opportunity to help Dr. Dahlgren build a database about the impact of PXE and safety issues during this vital phase of a woman’s life. See the item by Dr. Dahlgren in this issue. We were delighted with this year’s Nobel Prize in Medicine which has benefited PXE patients quite directly. Dr. Struk’s proposed research, approved by our Board, takes advantage of the knowledge that won these scientists the Nobel. See Linda Austin’s article in this issue. Our NAPE Board also approved research proposed by Dr. Kattesh V. Katti which will study improved diagnostic and treatment protocols for PXE vision loss using nanomedicine. The next issue of PXE Awareness will carry an article about his work. Please note in this issue the brief item about his latest discovery of a method to make nanomedicine safe for transporting medications to specific disease sites in the body. Over the past year we have rejoiced with PXE patients who describe their treatment with Avastin as a miracle sight-saver. We have been grateful for Genentech’s ground-breaking success in understanding VEGF and developing inhibitor drugs, including Avastin and Lucentis. We were stunned when Genentech informed retina specialists that it would make Avastin less available and encourage greater use of Lucentis for vision loss treatment. Genentech has now decided to reconsider as retina specialists around the nation reacted strongly against Genentech’s decision. A final decision will be made early in 2008. Details are available in an article in this issue. Please discuss this with your retina specialist and thank him/her for the quick vigorous response of the medical profession on our behalf. NAPE’s Board is reviewing this with the intent to inform Genentech and the NIH of the concerns of PXE patients. Dr. Chris Bergstrom’s Atlanta conference talk focused on VEGF inhibitor drug development. The good news is that many labs have joined the search to improve on Avastin/Lucentis in vision loss. The bad news is that these projects are far from completion with the possible exception of VEGF Trap now in a promising large third phase trial. In the meantime, we must rely on Genentech’s Avastin or Lucentis. We must work with Genentech in the best interests of PXE and AMD patients. The Atlanta conference in late September demonstrated the great contribution of the medical profession to our lives. We were informed at a remarkable level by Drs. Struk, Katti and Bergstrom on vital issues. Dr. Ken Neldner, now in his 80th year, kicked off the conference, and Dr. Rashmin Gandhi, eye surgeon, brought greetings from Sankara Nethralaya, the largest eye care center in the world. These men’s work schedules are daunting, yet they made time to fully participate in our conference, making themselves available for presentations as well as private conversations. We are grateful recipients of their generous care. Thank you. Thank you. In January, Dr. Katti, Dr. Struk, Board member Heidi Kevelin and I will go to India to visit Sankara Nethralaya. Thanks to Dr. Katti, we will have the opportunity to collaborate with the scientists and physicians of this institution on the inheritance of PXE, its diagnosis and treatment. Earlier in 2007, Dr. Katti visited with Dr. Struk in Berlin. Later this coming spring, Dr. Struk will visit Dr. Katti’s labs in Missouri. These brilliant scientists will work together to better understand, treat and over time to cure PXE. We are deeply grateful to them. They have made 2007 very special—and we believe 2008 will be even better. We at NAPE hope you enjoy a wonderful holiday season. Stay tuned for the next issue of PXE Awareness as we bring you up-to-date on the world of PXE. Fran Benham