When Multiple Myeloma Research Foundation founder Kathy Giusti was diagnosed 15 years ago, she was offered roughly the same treatment her grandfather received before succumbing to the disease 30 years ago.
"She was told you have a 1 year old daughter and you'll probably never see her into kindergarten. Because of her background in pharma[ceuticals] she said "I don't think so" and so she started this foundation," said Dr. Daniel Auclair, Director of Translational Research for the Multiple Myeloma Research Foundation.
Since 1998, the Multiple Myeloma Research Foundation in Norwalk has been working find a cure for this deadly disease, which got national attention earlier this month, when former NBC News anchor Tom Brokaw revealed he is being treated for it
Dr. Auclair said, "[Multiple Myeloma] is the second most prevalent blood cancer. It affects about 20,000 new cases a year. 60,000 people live with the disease. Some people confuse it with a bone cancer because it lives in the bone marrow."
Now through partnerships with various organizations, MMRF has developed several drugs for patients fighting the disease.
"As a consequence the overall median survival rate that was 2-3 years back when Kathy was diagnosed is now around 6-7 years," said Dr. Auclair.
"...there is still 15-20% of patients that have gotten very little benefit from these new agents. This is where we are putting a lot of our energy and effort."
In addition to working on a cure, MMRF is helping patients connect to one another
"Typically patients get treated and then once their treatment is finished, the doctor says ok see you in three months or six months and very often patients feel left alone and with no where to communicate or no one to talk to. We've put together this "coMMunity gateway" where patients can talk to one another, interact with physicians and clinicians and get the answers they need, get the information they need," said Dr. Auclair.
For more information about the Multiple Myeloma Research Foundation, visit http://www.themmrf.org.