Media Resources
Our online media resource contains the latest news generated by AA&MDSIF as well as general bone marrow disease facts and information. This press room is open to the media as well as the general public. You are welcome to read and use this information.
Press releases
Online press kit
Contact information:
The AA&MDSIF spokesperson Neil Horikoshi, Chairman of the Board of Directors, is available for interviews on a broad range of topics. To arrange for an interview, please contact Executive Director, John Huber at huber@aamds.org or 301.279.7202 ext. 100.
Quotes for print:
Robert Carroll, Ed.D.
Chairman Emeritus of the AA&MDSIF Board of Directors and Long-time MDS Survivor (deceased 2006)
"As a patient battling MDS since 1990, I believe it is important for patients to learn as much about their disease as possible. You need to become a partner with your physician on the best treatment options. I find it has also been important for me to develop a positive attitude about my disease and life in general, and make the most of each day not focusing on myself but on the work of helping others."
"Just 20 years ago, an individual diagnosed with bone marrow disease had no chance for survival. Thanks to federal funding, pharmaceutical interest, and the generous financial donations of supporters, patients now have hope. Advances in drug therapies and bone marrow transplants have increased survival rates considerably. Doctors are now able to extend the lives of aplastic anemia patients by years. Remission rates now are 60 percent to 80 percent, up from about 30 percent a decade ago. For MDS, care has improved, but remission rates have not. More research needs to be funded to gain a better understanding of this disease and develop new therapeutics to provide hope to the next generation of patients."
Richard Stone, M.D.
Dana Farber Cancer Center
Harvard University
President, AA&MDSIF Medical Advisory Board of Directors
"Myelodysplastic syndromes represent a heterogeneous group of diseases that occur predominately in older individuals and cause problems from infection, bleeding, and fatigue/anemia due to bone marrow malfunction. If is critical to perform research dedicated to understanding the genetic lesions that cause this disease so that agents which work specifically against the disease cell can be designed."
"Now we have three approved drugs in MDS. 5-azacitidine (Vidaza, [Pharmion]) and Dacogen, [MGI Pharma/SuperGen] can be used in all subtypes of MDS. In 2005, the drug lenalidomide (Revlimid [Celgene]) was approved for use in patients whose bone marrow cells have a so-called 5q- chromosomal abnormality. Such patients, who comprise about 10% of all MDS patients, can expect a significant response to this oral agent more than 2/3 of the time."
Ruth Cuadra, Secretary of the AA&MDSIF Board of Directors and Long-time MDS Survivor
"When I was diagnosed with MDS, I was hungry for information. Even though I was being treated at a major medical center, it was a long time before I met another MDS patient or anyone other than my doctor who'd even heard of MDS. Luckily, I found the Aplastic Anemia & MDS International Foundation. Their extremely helpful educational materials helped me understand my disease and treatment options."
"They linked me to an online support group where I could exchange email with other patients and their caregivers around the world. Suddenly I had solid information to guide me and a community around me to help allay my fears. When I underwent a bone marrow transplant from an unrelated donor, I was supported by the Foundation and my online friends. Since my recovery, I have tried to help the Foundation and to support patients the same way they supported me."
"At the time of my treatment, the only cure for MDS was a high-risk bone marrow transplant. Now, research has given patients more drug options for treating their MDS as well as less-risky transplant techniques that can be used with patients over a wider age range. With continued support from the government, as well as private organizations like the AA&MDSIF, a cure for all MDS patients is closer than ever, as we work toward the day when no one need suffer from this disease."
Neil Horikoshi, Chairman of the AA&MDSIF Board of Directors and Long-time aplastic anemia survivor
"What is unique about aplastic anemia from other medical diseases is that during my darkest days when my blood counts were particularly low and during my ATG treatment, my appearance remained exactly the same. An aplastic anemia patient generally will not look ill, or have any appearance of having a medical problem. (In retrospect, family members did say that I looked a bit pale, but never noticed the pale condition as it was so gradual.)"
"By the end of March, 2000, within a month of my initial diagnosis, I was treated with ATG in a local Honolulu hospital. I was not transfusion free until May, 2000 when my blood counts stabilized and I slowly began to produce blood. I returned to my job in August 2000 and felt I was a very lucky person. In January 2001, I showed signs of relapsing and got a second ATG treatment in Hawaii, and within a week, my blood counts shot up to the normal levels they are at today."
