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Rare cancer survivor’s foundation aims to make research accessible for all

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Kathy Giusti, left, with Eric Lander, founding director of the Broad Institute of the Massachusetts Institute of Technology and Harvard University, and Dr. Margaret A. Hamburg, commissioner of the US Food and Drug Administration at an event on September 25, 2013.

When Kathy Giusti was diagnosed in 1996 with multiple myeloma , a rare form of cancer that is nearly always fatal, she was only 37 years old.  She also had a 1-year-old daughter.

“It was devastating not just to find out I had cancer but one that was uniformly fatal and that the lifespan was just three years,” Giusti said. “Because I was working in pharmaceuticals, my first instinct was to see what drugs would be in the pipeline…It was devastating to learn to that there were so few options.”

Driven by her dire prognosis, Giusti founded the Multiple Myeloma Research Foundation (MMRF) in 1998, and over the past 15 years, the foundation has helped introduce six new FDA approved myeloma treatments. Today, that organization is thriving, and this week it became the first open access cancer research gateway, making its data freely available to patients and doctors all over the world.

Since its inception, MMRF has helped millions of patients fight the disease and significantly extend their lives. And one of those patients was Giusti herself.

When Giusti was first diagnosed, she had an early stage of the disease known as smoldering myeloma and needed only minimal treatments to keep her illness at bay – which was fortunate because at the time very few options existed for people with active forms of the disease.  

By the time Giusti’s cancer worsened, her foundation had already taken off.  Awareness and funding into multiple myeloma research had increased significantly, providing new hope to patients with the disease.

“I went into active disease in 2005 (and) we were fortunate that new drugs had become available in myeloma,” Giusti said.

Today, Giusti is in remission thanks to the help of newly discovered drugs and a stem cell transplant from her sister. While she’s grateful for the success she’s had fighting the disease, Giusti is quick to switch the focus from herself back to the larger community of patients MMRF has helped.  

“Since we’ve started, our organization has raised about $225 million. We have built our own tissue bank,…we’ve funded 350 grants and built our own clinical network comprised of 16 centers, which have done 47 phase one and two trials,” Giusti said. “And we’ve more than doubled the lifespan of our patients from three years to closer to seven years today.”

Giusti hopes that researchers will use the foundations new open access data to work collaboratively to advance treatments and search for a cure for the complex disease.

“We believe myeloma is uncommon and heterogeneous and we believe we will have to cure it one subtype at a time. In order to do that, we had to get data and put it in an open access system,” Giusti said. “That truly is the wave of the future in cancer research and drug development.”

Furthermore, Giusti wants to empower patients to do their own research into their disease – something she believes is crucial to both keeping patients hopeful and helping them determine the best course of treatment.

“I’ve been a big believer that the more you know, the better path you will pick in terms of your treatment. Cancer is unbelievably complex and more advancements are made every day, but as a patient you can’t expect your clinician to know every single thing about your specific cancer and subtype,” Giusti said. “There’s so much happening, it’s hard to stay on top of it all, so as a patient knowledge is power, and it will help you work with your doctor to optimize the path that you take.”

For more on the Multiple Myeloma Research Foundation, go to http://www.themmrf.org/