In Rare Cancers, It Takes a Village to Make a Difference
Building Support for Adrenal Cancer Research at U-M
When Diana Hart's brother was diagnosed with adrenal cancer, her whole world turned upside down. Like so many others who feel powerless in the face of life-threatening illness, Diana turned to the Internet for information and guidance, but she found very few resources. Considered an ultra-rare cancer, adrenal cancer strikes less than 400 people nationwide each year. Unlike patients with more common cancers, those with rare cancers don't have national support networks or immediate access to information about best practices and treatment options.
Diana's search ultimately led her to U-M endocrinologist Gary Hammer, M.D., Ph.D., director of one of the world's only comprehensive adrenal cancer clinics. Now, Diana has become a driving force for the disease, along with dozens of others who are working across the country to raise awareness about adrenal cancer -- channeling financial support into U-M's research and giving a voice to patients with this devastating disease.
"When Derrick was diagnosed, I didn't even know what the adrenal gland was, let alone that you could get cancer in it," recalls Diana Hart. "It was terrifying -- his children were very young and he had so much life left in front of him. It's like the world just stopped and we had nowhere to turn for answers. That's the reality for people with rare cancers."
"Then we found Dr. Hammer, and everything changed," adds Diana, whose brother was treated at U-M and has now been cancer free for nearly two years.
U-M's Comprehensive Cancer Center established one of the nation's first adrenal cancer clinics in the 1970s, which formed the basis for the Multidisciplinary Endocrine Cancer Program. Established in 2005, the program brings together experts in related fields to provide coordinated, exceptional care to patients diagnosed with adrenal cancer and other cancers of the endocrine system.
Since then, under the leadership of Dr. Hammer, U-M has become a world leader in adrenal cancer research -- an accomplishment enabled largely by a foundational gift made to the program by legendary U-M football coach Bo Schembechler in memory of his wife, Millie, who lost her battle with adrenal cancer in 1992.
"The Schembechler gift allowed us to convene an international consortium of adrenal cancer researchers and establish a mechanism for collaborative research, which is critical given that the adrenal cancer populations are so small," says Dr. Hammer. "Now the consortium makes it possible for adrenal cancer researchers to share information and establish best practices in patient care, as well as undertake multi- institutional research."
As a result, the U-M team, in collaboration with international colleagues, has made significant discoveries in adrenal cancer over the past few years, particularly around understanding the biology of the disease and the mechanisms that drive its growth.
"We have made major progress in a relatively short time," adds Dr. Hammer. "We now have a much clearer understanding of how the disease starts, which has not only allowed us to diagnose it earlier, but has also allowed us to develop and test new drugs designed to target adrenal cancer specifically."
All of this work has put U-M at the center of adrenal cancer research globally, and the network of patients and their families who've been treated by Dr. Hammer and his colleagues, medical oncologist Frank Worden, M.D., and endocrine surgeons Paul Gauger, M.D., and Barbra Miller, M.D., has continued to build momentum on the disease by raising awareness and support for additional research.
Diana Hart, for example, enlisted the support of her longtime friend Geno Auriemma -- University of Connecticut women's basketball coach and U.S. women's basketball coach for the upcoming 2012 Summer Olympics -- and his wife, Kathy, to co-host two adrenal cancer events, which raised the capital necessary for Dr. Hammer to establish the world's first adrenal cancer tissue repository.
Cathy and Bill Bell established an adrenal cancer foundation in memory of their late son, Spencer, another victim of the disease. Spencer was an up-and-coming musician with his band, the Stevedores. His family, close friends (including the band 100 Monkeys), and other supporters host concerts and other events around the world to raise awareness about adrenal cancer and to support U-M's research.
Kat Wojtylak, product manager at Draper Therapies and a cancer survivor herself, encouraged her company to get involved with the adrenal cancer effort. Draper Therapies adopted the cause and now supports an adrenal cancer website with information about upcoming events and fundraising successes.
"We also include information about adrenal cancer research in all of our product catalogues, and we include an adrenal cancer pamphlet along with every order we ship out," says Kat. "This year, we also initiated special product promotions, with 50 percent of the proceeds going to support adrenal cancer research."
These initiatives, along with efforts by dozens of others, have yielded significant funding and provided seed investments in a number of important projects, including new work in genetic sequencing.
"While all adrenal cancers begin in the adrenal gland, we suspect that there are a number of different ways in which these cancers develop. Our genetic sequencing work will allow us to identify the molecular variations among adrenal cancer tumors," says Dr. Hammer. "Ultimately, instead of treating all adrenal cancers the same, we'll be able to customize treatments based on the genetic factors involved in each patient's cancer."
The widespread financial support of U-M's adrenal cancer research -- from Bo Schembechler's original gift to the grassroots fundraising of Diana Hart and others today -- has not only paid off in terms of immediate progress, but has also helped set the stage for a major investment in adrenal cancer research by the National Cancer Institute. The NCI has just announced that it will make a multi-million-dollar investment in an adrenal cancer genetic sequencing project with the U-M team leading the effort.
"Ten years ago, adrenal cancer wasn't on anyone's radar. Now, because of the support of so many people and the research infrastructure and discovery that support has enabled, we're poised to make a transformational difference on the disease over the next ten years," adds Dr. Hammer.
For Diana Hart, seeing the power that individuals have to make a real difference in rare cancers is extremely energizing.
"I've always been involved in cancer fundraising -- I did the walks and wore the ribbons. But before this disease entered my life, I really didn't understand how few resources there are for rare cancers-for patients and for research," says Diana. "I feel like all of us involved in the adrenal cancer fight are showing how patients and their families can get involved and help make progress happen on these kinds of orphan diseases. It's really very exciting."
For more information on how you can make a difference in rare cancers, please contact UMCCCAnnualGiving@umich.edu.