Making a difference about Multiple Myeloma
Editor's note: It's almost 4 p.m. EDT now, and this story is back in the rundown.
Tonight, Ann Curry will introduce you to a truly remarkable woman in this week's Making a Difference segment.
Ten years ago Kathy Giusti was diagnosed with a rare form of blood cancer called Multiple Myeloma. It's known as "orphan cancer" because there are relatively few people in the country who have it and because, many say, not a lot of money is allocated for research. Until Kathy came along. Upon diagnosis, Kathy quit her job as a pharmaceutical executive and moved back East to live closer to her twin sister Karen. Kathy had no plans to let cancer take over her life. In fact, during our interview, Karen told Ann that two weeks after Kathy's diagnosis -- while Karen was still in tears trying to come to grips with the news -- Kathy told her of her plans to not only fight the disease for herself but for all Myeloma patients.
About a year later, the two sisters started the Multiple Myeloma Research Foundation. Just nine years later the group has raised more than $60 million. The sisters also created the Multiple Myeloma Research Consortium, which has helped overcome one of the big obstacles in medical research -- the lack of coordination between scientists and drug makers. The consortium consists of some of the best cancer hospitals in the world and works to bring new drugs to the market as quickly as possible. As you'll see tonight, they've had great success.
Kathy would be a bit angry with me if I didn't mention the hundreds of people with whom she works both at her organizations and in the medical community. She'd probably say they deserve all the credit - not her. I had the privilege of spending an afternoon with one of Kathy's dearest friends -- Dr. Ken Anderson of the Dana Farber Cancer Institute in Boston. Dr. Anderson, one of the best Multiple Myeloma doctors in the world, was quite frank in describing the impact Kathy has had. He has been studying and treating Myeloma patients for more than 20 years and he describes Kathy this way: "She's put Myeloma on the map. She transformed the way we treat this disease."
Beyond Myeloma, Kathy hopes the model she has created will be utilized by other cancer organizations around the world. I have no doubt she's on her way to achieve even more success. If you were to ask Kathy if she's proud of her accomplishments -- she'd probably say yes -- but quickly want to brag more about what she calls her biggest sources of pride: her two children and husband, Paul. That's just the type of person she is.
Read more from Sam Singal
To London, via Paris and a train
TRACKBACKS
Trackbacks are links to weblogs that reference this post. Like comments, trackbacks do not appear until approved by us. The trackback URL for this post is: http://www.typepad.com/services/trackback/6a00d83451b0aa69e200d834e055dd69e2
Dear Kathi
My Dad just got diagnosed with nonsecretory multiple myeloma and our Dr. is saying that the insurance company may not cover taldomide. Could you please help me and show me where to turn. He has coverage with va ss disability and a blue cross supplement.Because it is nonsecretory it was not found early and his kidnesy are starting to fail and he has anemia. Time is of the essense.
Thanks Pam 209-603-7276
Thanks Pam 209-603-7276
Pam Flanagan (Sent Jun 21, 2007 10:02:56 AM)
Dear Kathy,
My young 41yr.old nephew was recently diagnosed about6 mos. ago.
I must THANK YOU for your MSNBC interview in bringing much needed AWARENESS on this form of multiple myeloma cancer to the fore-front.
As I am also greatful for all the work you & your family are providing to help other MM patients in having better access to varied trial medications that had been tied-up in red-tape.
although this is a very fightening disease & very scary for other's to hear- HOWEVER, I feel it URGENT & NECESSARY with interviews such as yours.
As I strongly feel this serves as the only way for MM patients to find faster & better options while dealing & looking for longer Remissions in search for a cure.
In feeling greatful to your interview has provided far more options in Help & Hope leading to understanding & direction as I will be sending your Positive supportive onto my nephew in knowing this will be very helpful.
My BEST also goes to you & your family in your stuggles as I have strong belief & encourgement as
a faster cure will be discovered due to your determination & strenght.. Blessing onto you & Thank you again,
Skye
Skye Dublin, CA (Sent Aug 13, 2006 12:21:46 PM)
I think it's great that Kathy Giusti is able to make such a difference, but I can't help but notice it took a sick pharmaceutical executive to get any traction. The pharmeceutical companies, like the oil companies, aren't really our friends. They're a lot more interested in getting people on life-long pill regimes than curing disease. All I can say is that I wish all illnesses had a champion like Mrs. Giusti, and I wish her the best of luck.
Lee Steele Mountain VIew , CA (Sent Aug 13, 2006 11:14:05 AM)
As a patient with multiple myeloma, diagnosed in 2003, I am thankful for the contributions made by Kathy and her sister,Karen. The MMRF is a wonderful resource for the myeloma community.
I commend MSNBC for bringing awareness of multiple myeloma to the public.
I would, however, strongly suggest that future programs, related to multiple myeloma, be focused on the promising and encouraging research and treatment options that are currently available to fight this disease.
Multiple myeloma is now on the brink of being labeled as a chronic & treatable autoimmune disease. Please do not shatter the hopes of myeloma patients by presenting such a dismal outlook, especially when research findings and treatment options have brought us this close to finding a cure!
Sincerely,
Carol
Carol Murray-Rossi, Warwick,RI (Sent Aug 13, 2006 10:42:41 AM)
Hi there, I am a MM patient of Dr. Anderson's living with this disease, almost three years now. I have great respect for Kathy and what she has done for the cause but I must tell you that the broadcast was very depressing for me and certainly had to scare any recently diagnosed individuals. To hear someone in Kathy's position talk about herself as though she were already gone, and to not hear hope in her voice that perhaps a cure WOULD be found in her lifetime, was devastating for me to hear. I am only thankful that my parents, in their 80's were not home to see this as they would've been truly concerned especially since I too had a transplant just a year ago.
Thank you for your time. Gail Sullivan
Gail Sullivan, North Kingstown, Rhode Island (Sent Aug 12, 2006 4:46:19 PM)
SEND A COMMENT
PLEASE READ: All comments must be approved before appearing in the thread; time and space constraints prevent all comments from appearing. We will only approve comments that are directly related to this post, use appropriate language and are not attacking the comments of others.