Patient and Family Webinars

Costa Herbert, RN, is the Blood and Marrow Transplant Program Nursing Supervisor at Seattle Cancer Care Alliance.

This pre-recorded session gives an overview of what a patient and their caregivers can expect during treatment for bone marrow failure disease including side effects, emotional impact and financial challenges.  

Dr. Bart Scott presents an overview of how bone marrow failure conditions are diagnosed including a discussion of the tools used by hematologists and oncologists to determine the best treatment options for their patients. 

This is a pre-recorded session which aired during the 8th Virtual Patient Conference hosted by AAMDSIF and the Fred Hutch and convened by Dr. Joachim Deeg.

Krisstina Gowin, DO is an Assistant Professor of Medicine at the University of Arizona. Dr. Gowin graduated from Chicago College of Osteopathic Medicine in 2009, where she received a merit scholarship and recognition from the American Women’s Medical Association for outstanding academic achievement. She completed internal medicine residency at University of Southern California, hematology and medical oncology training at Mayo Clinic in Arizona, fellowship training in integrative medicine at the University of Arizona. She is board certified in medical oncology, internal medicine and hematology.  

This session covers how patients and their loved ones can improve their quality of life while living with MDS and MPN. 

The faculty from the 8th Patient Conference join together to answer audience-submitted questions about treatment options, clinical trials and other topics related to bone marrow failure conditions. Led by Dr. Deeg, this session was pre-recorded during the virtual event on June 26, 2021. 

Dr. Ruben Mesa is the director of UT Health San Antonio MD Anderson Cancer Center, one of only four National Cancer Institute-designated cancer centers in Texas. For almost 30 years the cancer center has had a deep focus on providing world-class cancer care, advancing cancer research and educating the next generation of cancer care scientists and care providers.  He is a global expert in Myeloproliferative Neoplasms (MPNs).  

This pre-recorded session covers the non-transplant options for patients living with MPNs. 

Sioban Keel, M.D., is a board certified hematologist at SCCA and a UW associate professor of Hematology and Medicine.

Dr. Keel believes that excellent medical care requires a combination of up-to-date knowledge and compassionate, individualized patient care. She recognizes that excellent care requires physicians who communicate effectively with and educate each patient so that they understand their condition and can be a partner in determining the best treatment plan.

Dr. Keel earned her M.D. at the University of Minnesota. Her clinical and research interests include benign red blood cell disorders, iron metabolism, acquired aplastic anemia, congenital marrow failure syndromes, neurovisceral porphyrias, hemostasis and thrombosis disorders.

This session discusses how some bone marrow failure diseases can be inherited and what that means for patient care. 

Dr. Bart Scott specializes in treating patients with myelodysplastic syndromes, or MDS, and myeloproliferative neoplasms, or MPN. These are a collection of diseases in which the bone marrow produces either too many or too few mature blood cells. Dr. Scott studies ways to improve treatment strategies for these patients, in particular new combinations of conditioning regimens prior to blood stem cell transplant.

This session focuses on transplant options for MDS patients. 

Dr. Kanwaldeep Mallhi is a pediatric oncologist and hematologist who specializes in nonmalignant blood disorders in children. These disorders include immunodeficiencies, bone marrow failure and metabolic errors. She is an expert in pediatric blood stem cell transplants, and her research focuses on alternative donor sources and the development of reduced-intensity conditioning regimens, which use radiation, chemotherapy or other procedures to remove diseased or failing cells prior to transplant.

Dr. Mallhi discusses severe aplastic anemia (SAA) and how it is treated based on the age and health condition(s) of the patient.

Patient panel discussions are a chance to meet some of the inspiring patients, caregivers and parents who are dealing with a bone marrow failure disease.  Panel discussions are a bit different from our regular educational webinars so please plan to participate via the Q & A window.  

This is a great recorded webinar for people diagnosed with aplastic anemia or those who are providing care to someone with the disease.  

As always, our panelists cannot provide you with medical advice and we encourage you to ask your treating hematologist or oncologist about your specific health needs. 

Dr. Carraway does a deep dive into the most promising MDS treatments and research presented at the December 2020 ASH meeting including drugs that are in the development pipeline and will soon be available for patients. 

You can download the companion publication Research Summary - ASH 2020 MDS AML here:  https://www.aamds.org/education/patient-guides-and-fact-sheets 

Dr. Shaffer provides an overview of the haploidentical transplant process and discusses how this treatment option might be right for some MDS patients. 

Dr. Brian Shaffer is a board certified hematologist specializing in bone marrow transplantation for leukemia, myelodysplastic syndromes (MDS), lymphoma and other bone marrow disorders.  He works with a team at Memorial Sloane Kettering Cancer Center to provide comprehensive cancer care to patients.  

Dr. Shaffer is a researcher as well as a clinician who focuses on the role of Natural Killer (NK) cells in outcomes after transplant.  NK cells are white blood cells that have anti-tumor and anti-infection properties.  Dr. Shaffer is also focused on improving outcomes for transplant patients without a matched sibling donor through his work as a principal investigator for a number of ongoing clinical trials. 

Dr. Ivana Gojo, Associate Professor of Oncology at Johns Hopkins Medicine, discusses the current treatment options for patients with relapsed/refractory AML as well as some of the most promising treatment options that are in clinical trial. 

Lucy Godley, MD, PhD, (UChicago Medicine) discusses the connection between heredity and MDS. While MDS is most often not inherited, there are some genetic mutations and other genetic conditions that can lead to a diagnosis of MDS.

This recorded session includes expert clinicians, a patient advocate, and a patient for “Establishing Goals of Therapy While Managing Myelodysplastic Syndromes,” an interactive discussion of MDS and potential treatment approaches.

This hour-long educational session helps patients and caregivers develop a clearer understanding of treatment options, side effects, quality-of-life changes, and financial impacts associated with myelodysplastic syndromes (MDS), as well as improving communication with the care team to set realistic expectations for treatment and access informative resources.

This program may help patients with MDS cope with feelings of anger, stress, and anxiety when diagnosed and throughout their disease course. It also provides guidelines for maintaining open communication among patients, caregivers, and the healthcare team, all essential for managing treatment.

Tanya M. Bass, MS, MEd, CHES®, CSE, is a national award winning sexuality educator and a subject matter expert in the areas of health equity and sexual health. She is an alumna of North Carolina Central University’s (NCCU) Department of Public Health Education, where she has served as an adjunct instructor for the past 10 years. Currently, Tanya is the lead instructor for Human Sexuality and will be defending her PhD in early 2021. 

Ms. Cook provides an overview of the concerns that patients with bone marrow failure diseases should consider related to sexual intimacy.   

Please note that the content of this webinar may not be suitable for all ages. 

Ilene Weitz, MD (Keck Medicine, USC) talks about the latest thinking in PNH treatment and will announce a new AAMDSIF opportunity for PNH patients, family members and caregivers. 

Recorded at the Spring 2021 Patient & Family Conference. 

Tiffany Tanaka, MD (UC San Diego Health) helps MDS patients understand the most common mutations and how genetic testing can help patients get the best possible treatment. 

Session recorded as part of the Spring 2021 Virtual Patient & Family Conference. 

Nathan Punwani, MD, (Cedars-Sinai) provides an overview of the treatment options for patients with higher risk MDS or who have transitioned to AML.  

Recorded during the Spring 2021 Virtual Patient & Family Conference. 

Ryotaro Nakamura (City of Hope) facilitates this session on the rapidly changing thinking about transplant options for patients with aplastic anemia, MDS and other bone marrow failure diseases.