In 1998, Kathy Giusti was diagnosed with multiple myeloma. At age 37, she was the young mother of an 18-month old daughter who now faced the tragic loss of a parent afflicted with a possibly-terminal blood cancer. A family disaster was in the offing.
Kathy reacted at first like many another young parent. Afraid that her new daughter would never know or remember her, she began to take steps to preserve her story for her child's future. As many of us would, she wanted to be able to speak to her daughter after her death.
But Kathy Giusti was not just any young mother, cringing in fear. She was, in fact, a high-flying business executive who had served as a powerful business leader, including a stint at drug-maker Searle as head of its arthritis division. As such, she quickly went to work.
Kathy created the Multiple Myeloma Research Foundation, an organization designed to raise money for research and contribute to efforts to find treatments for this terrible affliction. Using her name and skills, Kathy generated a stunning $165 million in funds. Later, in 2004, she created the Multiple Myeloma Research Consortium, an agency designed to encourage researchers to work collectively with business in such a way that would optimize the speedy development of new treatments.
Kathy still lives today. She is in remission, and has made it possible for her children to get to know her. Through her work, she saved herself, and tens of thousands like her, including this writer.
Kathy's efforts have obviously paid off. She is directly responsible for four new drugs. What's more, she has furthered the model for clinical research and development, paving the way for dozens of other similar efforts. Genomics, data management, tissue banking, and clinical trials have all been advanced by her work.
As you can imagine, multiple myeloma sufferers all owe Kathy Giusti, and hold her in the highest regard. And the nation has honored her as well. She has been recognized for her work by the New York Times, the New Yorker, the Wall Street Journal, the Economist, Forbes, CNBC, the NBC Nightly News, the CBS Evening News, and Time, being named by that august publication as a member of the Time 100 for 2011. She has received the Harvard Business School Entrepreneurial Award, the Partners in Progress Award from the American Society of Clinical Oncology, and the Centennial Medal for Distinguished Public Service from the American Association for Cancer Research.
And her work is not done. Today, she serves at the Institute of Medicine on the National Cancer Policy board, having been appointed to that post by President Bush in 2003. In addition, she is a member of the Board of Directors for IMS Health, an international company that supplies the pharmaceutical industry with sales data and consulting services. And she continues to pressure the FDA to optimize the development and approval of effective new medicines.
Thus, in her effort to leave a legacy for her children, she has left one also for cancer sufferers everywhere, including me.
Readers can do their own part to continue the work of Kathy Giusti. Please contribute to the upcoming "Make It A Great Day" Race, a walk and half-marathon to be held in Center Brunswick, NY, starting at Tamarac MS/HS, on Saturday, June 4, 2011, sponsored by www.thedragonflyadventure.com. Your donations benefit the Capital District Cancer Resource Foundation, an organization which helps make it possible for less-advantaged denizens of New York's capital region to take advantage of the advances in cancer treatment. In so doing, you'll help give cancer patients a chance to get to know their own families.
And, in your own way, you'll mirror the efforts of Kathy Giusti, a modern-day miracle worker.
Sunday, May 22, 2011
Saturday, May 7, 2011
Thursday, May 5, 2011
As I compose this message, I am sitting in a motel room at the Best Western Fireside Inn along Moonstone Beach in Cambria, California. This incredible hamlet, with its maze of rustic boardwalks serving as a “cliff stroll” more beautiful even than the one in Newport, Rhode Island, plus its plethora of quaint shops lining the street, lies about half-a-dozen miles south of San Simeon and the Hearst Castle. You’re missing something if you choose not to come here.
Bride and I are here because of the new role that the notion of family now plays in our lives. It’s been a year now since my diagnosis and the commencement of my treatment, and like anyone who faces an event of that import, we’ve experienced an adjustment in our priorities and attitudes. Retirement has presented us the opportunity to reconnect with relatives and friends, and so we made a recent decision to trek to the west coast to visit with Donna’s niece, her husband, and her sons, as well as with my aunt, uncle, and cousin, all people who mean a lot to us. As they always say, life is short.
There are some perks that accompany a “relative quest.” The train ride from Albany to Chicago to Los Angeles to San Clemente was a first for us, and quite an experience. Overnight train travel can be arduous. Our first berth was, for instance, extremely claustrophobic and uncomfortable, and I wondered at first if we had made a mistake. However, the next room, acquired after a train change in Chicago, was a significant improvement, and we enjoyed the scenery out the window, especially the elk in the Rockies that were racing the train through the falling snow.
Our niece lives in a beautiful home in San Juan Capistrano, seconds from the beach. The weather was unseasonably warm and the sun ever-present, making our tour of the famed mission there quite a stunning experience. The gardens are the most beautiful I’ve ever seen. We saw one swallow, and lots of history. Later we had an exquisite dinner with drinks on the Fisherman Dock (which shook with each crashing wave), toured a luxury home high on a cliff above the ocean, and spied Casa Pacifica a short distance away, the former estate of Richard Nixon.
Speaking of presidents, we toured the Nixon Library and birthplace, nestled in a residential neighborhood in nearby Yorba Linda. The visit definitely gave me a new, more sympathetic impression of the man. I was photographed at his graveside, and got to listen to the famed 18 minute gap in a Watergate tape, with its notorious 9 clicks, all part of a display in the museum there. Two days later, we visited the massive Reagan Library, high on a mountain above the Simi Valley, north of Los Angeles. The views must equal Grand Canyon in grandeur, and the entire installation is awe-inspiring. Visitors can tour the Reagan-era Air Force One, nestled on pylons in an enormous hanger there, step into an exact replica of the Oval Office, and experience, in one display, what it must have been like to have been, on that famous March 1981 day, in the center of the assassination attempt on the President. If you come, expect to be over-whelmed. And for those who accuse this monument to be typical conservative Republican bloviation, I want to point out that one of its trustees, his name one of many I noted to be carved in marble in the lobby, serves as President Obama’s top economic advisor.
Tomorrow, we will visit the renowned Hearst Castle, built by the mercurial William Randolph Hearst, the famed newspaper tycoon, having this afternoon driven many miles north along the famous Pacific Coast Highway, its reputation for spectacular natural beauty well deserved. Later in the week, I join my brother and his wife for a visit to my treasured uncle, aunt, and cousin near San Francisco, before boarding Amtrak once again for the return trip home.
I feel like I’m making full use of the new life given me. I know I’m a lucky man.
Bride and I are here because of the new role that the notion of family now plays in our lives. It’s been a year now since my diagnosis and the commencement of my treatment, and like anyone who faces an event of that import, we’ve experienced an adjustment in our priorities and attitudes. Retirement has presented us the opportunity to reconnect with relatives and friends, and so we made a recent decision to trek to the west coast to visit with Donna’s niece, her husband, and her sons, as well as with my aunt, uncle, and cousin, all people who mean a lot to us. As they always say, life is short.
There are some perks that accompany a “relative quest.” The train ride from Albany to Chicago to Los Angeles to San Clemente was a first for us, and quite an experience. Overnight train travel can be arduous. Our first berth was, for instance, extremely claustrophobic and uncomfortable, and I wondered at first if we had made a mistake. However, the next room, acquired after a train change in Chicago, was a significant improvement, and we enjoyed the scenery out the window, especially the elk in the Rockies that were racing the train through the falling snow.
Our niece lives in a beautiful home in San Juan Capistrano, seconds from the beach. The weather was unseasonably warm and the sun ever-present, making our tour of the famed mission there quite a stunning experience. The gardens are the most beautiful I’ve ever seen. We saw one swallow, and lots of history. Later we had an exquisite dinner with drinks on the Fisherman Dock (which shook with each crashing wave), toured a luxury home high on a cliff above the ocean, and spied Casa Pacifica a short distance away, the former estate of Richard Nixon.
Speaking of presidents, we toured the Nixon Library and birthplace, nestled in a residential neighborhood in nearby Yorba Linda. The visit definitely gave me a new, more sympathetic impression of the man. I was photographed at his graveside, and got to listen to the famed 18 minute gap in a Watergate tape, with its notorious 9 clicks, all part of a display in the museum there. Two days later, we visited the massive Reagan Library, high on a mountain above the Simi Valley, north of Los Angeles. The views must equal Grand Canyon in grandeur, and the entire installation is awe-inspiring. Visitors can tour the Reagan-era Air Force One, nestled on pylons in an enormous hanger there, step into an exact replica of the Oval Office, and experience, in one display, what it must have been like to have been, on that famous March 1981 day, in the center of the assassination attempt on the President. If you come, expect to be over-whelmed. And for those who accuse this monument to be typical conservative Republican bloviation, I want to point out that one of its trustees, his name one of many I noted to be carved in marble in the lobby, serves as President Obama’s top economic advisor.
Tomorrow, we will visit the renowned Hearst Castle, built by the mercurial William Randolph Hearst, the famed newspaper tycoon, having this afternoon driven many miles north along the famous Pacific Coast Highway, its reputation for spectacular natural beauty well deserved. Later in the week, I join my brother and his wife for a visit to my treasured uncle, aunt, and cousin near San Francisco, before boarding Amtrak once again for the return trip home.
I feel like I’m making full use of the new life given me. I know I’m a lucky man.
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