Sharon F. Terry

Sharon Terry, president and CEO of the Genetic Alliance, describes her climb up sacred Hua Mountain.

GEN’s China Dispatches are issued by Sharon F. Terry, president and CEO of the Genetic Alliance, a network of more than 10,000 organizations, including 1,200 disease-advocacy organizations, that enables individuals, families, and communities to reclaim their health and become full participants in translational research and services. A pioneer of consumer participation in genetics research, services, and policy, Sharon F. Terry serves a leadership role not only at the Genetic Alliance, but also at the Genetic Alliance Registry and Biobank and at PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). After visiting a children’s hospital Shandong University in her last dispatch and attending a conference at the Shandong Academy of Medical Science in the one previous to that, Terry contemplatively hikes up Hua Mountain.

This is a day for reflection. Today we climbed Hua Mountain, one of the five sacred mountains in China. It is a remarkable mountain, certainly for its height, and also for the delicate nature of the ribs and fins of the mountain to create the impression of a flower.

Our early morning conversation includes discussion of new anticorruption rules. The sense is that the “forbiddens” are excessive. For example, it is a tradition that during the Autumn Festival a university department chair gives his employees moon cakes. These little cakes apparently caused one chair to be sanctioned for this action. It reminds me of the rules around no food at NIH meetings; this always appears excessive to the participants who often volunteer their time, and then are asked to go to the extra trouble of purchasing food outside the meeting and getting reimbursed for it. We talk about the need in both the U.S. and China to limit true corruption but not hamstring productive relationships. The balance is not easy, and it seems the pendulum often swings too far in one direction.

Though my husband and I have climbed mountains on many continents, and spent entire 10-day vacations in the Alps (Tour de Mont Blanc) or the Dolomites (Alta Via 2), we have not experienced a mountain like Hua. We take a cable car to the top of the West Peak. The cable car is on a 4,100-meter undulating cable, the longest in the world. We move through the fog and up the mountain, passing ancient footpaths to caves where Buddhist and Taoist holy men and women dwelled. Alighting at the top, we move with throngs of people toward the highest summit—the South Summit at 2,194 meters above sea level. The way is not the typical footpath one might see in the Alps, or Rockies, it is not crush stone, or dirt. The entire way is stairs—both cement and hand hewn out of the mountain. It is clear that this path is made to bear the footsteps of many pilgrims, since this is one of the most popular hikes in China. Anything less than these solid and stationary paths would not withstand the droves of people that visit. At points along the way, we are passed by men and women who have either a bamboo pole across their shoulders with a rock tied to each end, or a backpack frame made of wood with large rocks packed in it. They move with great effort steadily up the mountain, bringing this building material to the workers still constructing the many kilometers of pathways around the five peaks.

Along the way we are offered refreshments and trinkets. We have no need of refreshments; our host Chenchen Pei, the secretary to Professor Gang Wang of the Fourth Military Medical Hospital, has packed us an assortment of goodies including a hunk of ham, a soy sauce-soaked egg, Red Bull, and even a Snickers bar! We are all set for the five hours we spend hiking. The views are among the most magnificent we have ever witnessed. The mist rises out of the valleys, leaving the peaks uncloaked. The effect is breathtaking and unbelievable. I am in awe of the immensity of the shear mountain faces, at almost 90-degree angles, and the interplay of the mist and sun. It is a sight I have never seen before. It reminds me of why we are here, and the interplay between what the natural world offers and what the labor of humans provides. I have great hope that our intense labors will increase access to health for all. My memory of the steady toil of the workers providing a path through the mist will inspire me for months to come.

Previous articleCIRM President Steps Down after Six Years
Next articleAstraZeneca, Evotec Launch Kidney Disease Collaboration