Dear NAPE Friends,

NAPE was pleased to receive Genentech’s response to our concerns as to the continuing availability of Avastin. Dr. Arthur Levinson, Chairman and CEO, informed us of Genentech’s agreement with the American Academy of Ophthalmology and the American Society of Retina Specialists to assure the supply of Avastin for vision loss treatment. We are deeply grateful and will include details of the plan in the next issue of PXE Awareness.

This issue focuses on NAPE’s new relationship with India’s Sankara Nethralaya and about our visit to this remarkable eye care center and to India itself by NAPE Board member Heidi Kevelin, Medical Advisors Drs. Berthold Struk and Kattesh Katti and me. Some may wonder why we should be interested in eye care in another country – and why India.

I hope our reasoning will become clear through this issue. The most pragmatic reason is found in the astonishing services of Sankara Nethralaya. They care for many more patients per week than any Western ophthalmology practice. They turn no Indian in need away. Indeed, they seek out such people through a remarkable program which brings care to rural villages. They focus on vision, but they also pay attention to the whole person. If glasses are needed, they are made on the spot and given without charge. If more demanding care is needed, the patient is brought to the hospital in Chennai where housing, food and medical care are provided. When the patient is well enough to go home, transportation is provided. Almost half of Sankara Nethralaya’s patients are cared for in this way. Others who can pay come from all over India, Asia and increasingly from around the globe as word spreads that care here is as good as that in better known centers, that costs are substantially lower and that patients are not simply treated and sent away, but are cared for by skilled professionals until they are well enough to manage their own care.

Because Sankara Nethralaya treats so many patients, it stands to reason that they may have seen more PXE than Western doctors who treat fewer patients. A review of well-kept records of their patient load over the last ten years identified over 170 PXE patients. Dr. Struk, Dr. Katti and I agree that genetic screening of these patients and relatives can help us to understand ABCC6 better and over time to tease out its secrets which cause our problems. Dr. Struk discussed at length with leadership of Sankara Nethralaya’s Genetics Department tests important to the process. Sankara Nethralaya can easily handle any and all of these tests and has the latest technology needed to conduct them. It is in the interest of all PXE patients - Indian, American and all others - to pursue this research opportunity. Beyond pragmatic self-interest, Heidi, Dr. Struk and I came away with the hope that we can help Sankara Nethralaya in some small way to achieve its humanitarian goals. Please read Heidi’s traveler’s glimpses of India, the article by me on Sankara Nethralaya and the other articles which result from presentations at our conference in Chennai. I hope you will join in our commitment to conduct research which will help all PXE families, and that you may become interested in Sankara Nethralaya and in India too.

This issue does not include all that we planned for it. To keep it to a manageable size, we will include presentations made in India by Drs. Struk and Katti in the June issue. This issue introduces you to what we intend to be a long rewarding relationship with Sankara Nethralaya. We hope you will become involved in this important effort. To help us better understand and appreciate India we have included a reading list prepared for us by reference librarian, Gowri Ravindranath, of the American Consulate in Chennai. I am working my way through it and hope you will join me in learning more about today’s India. I am sure you will find the Consulate’s Public Affairs Officer, Fred Kaplan’s, report on health care cooperation between the U.S. and India informative and interesting.

Over the last few years, PXE Awareness has been printed in 18 point type. The Library of Congress considers 14 point type the standard for large print. We have decided to try 14 point type in this issue. Please let us know what you think of it. If needed, we will return to the larger print.

Finally, please note the donation envelope. During my tenure as NAPE President since 2001, we have requested donations only twice. We do not press members repeatedly for funds as we know many struggle in mid and late life with vision loss and the increased financial burdens it causes. We work very hard to keep NAPE expenses low. Our Board members’ India trip cost NAPE nothing. Board members are asked to pay their own expenses for conferences and to conduct our business. Most also contribute to NAPE. With these things in mind, I am asking those who can to contribute whatever you can to be used for our research efforts. Every penny donated for research is spent for research. Every penny helps us to find needed answers to ABCC6’s ability to interfere with our lives. Thanks for whatever you can do in our shared cause.

With all good wishes,

Fran Benham, PhD

P.S. The cover features Dr. S.S. Badrinath, about whom you can read in my article about Sankara Nethralaya. The welcome sign greeted us at our conference. The beautiful plate, so evocative of India, was given to me for representing you at the conference. It decorates NAPE’s office along with the picture of Jagadhguru His Holiness, Sri Chandrasekarendra Saraswathi Swamigal of Sri Kanchi Kamakoti Peetam, who inspired Dr. Badrinath to found Sankara Nethralaya.