- Kathy Giusti
- New Canaan, CT
- United States
Founder and Chief Executive Officer, Multiple Myeloma Research Foundation
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What would you do if you were told that you had a fatal disease?
On January 12, 1996, I was diagnosed with multiple myeloma - an incurable blood cancer. The oncologist held my hand and looked me in the eye: "Kathy, it is 100% fatal. You have about 3 years. Get your life in order. Spend time with your family."
At age 37, I was the mother of a 1.5 year old daughter. I asked myself a tough question: despite knowing I was dying, what would make me happy? My goal became clear: to live long enough that my daughter would remember me.
The odds were against me. Myeloma had no awareness, research, or funding. The treatments offered in 1996 were the same as in 1956.
I had to start an organization dedicated to this disease to change the dismal statistics. My identical twin sister Karen and I founded the Multiple Myeloma Research Foundation (MMRF) to kick start research with the goal improving the outlook for patients like me
The work funded by the MMRF has dramatically changed the prognosis of a myeloma diagnosis. Five promising drugs have been approved by the FDA, the latest just in July 2012. Myeloma patients are living on average seven years and longer. There are eight more drugs in clinical trial, most of them tested through the clinical framework set up by the MMRF - including one that is under review by the FDA with the potential of being approved in the next 3 months. Mapping of the myeloma genome, funded by the MMRF, will likely lead to new breakthroughs and allow the right patients to be matched with the right drug at the right time.
Seventeen years on from my diagnosis, I have just sent my daughter, who I never expected to see start Kindergarten, off to college. The MMRF has achieved more than I could have ever imagined –doubling the lifespan of patients and changing the face of cancer research. But my story is still very much the exception, my mission and the MMRF’s mission is to make this the norm – to give other patients the chance to experience these life moments and ultimately to find a cure.