Patient and Family Webinars

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 webinar for people diagnosed with PNH or those who are providing care to someone with the disease.  We extend a special invitation to newly diagnosed patients to join us to learn more about living with the disease and to sign up for our PNH support group emails.  

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. 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. 

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.

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. 

Join AAMDSIF's Leigh Clark for a panel discussion with two longer-term PNH patients, Marlena Connor and Jessi Hackney. Marlena and Jessi talk about their experiences as patients, what they wish they'd knowns when they were being diagnosed, what resources are important to them and how patients (and caregivers) can connect with others affected by PNH.

Dr. Ramy Hanna is an Assistant Clinical Professor of Medicine and Nephrology at the University of California Irvine UCI-Health. He is a clinician-educator who works at the intersection of patient education and research, participating in ongoing research into diseases of the kidneys (nephrology) as it relates to complement disorders such as PNH. Dr. Hanna is focused on working with underserved communities and the expanding field of Artificial Intelligence/Machine Learned related to improving the diagnostic process and treatment outcomes for patients.

Dr. Hanna discusses the special concerns that PNH patients have related to kidney disease, how the diagnostic process works and what treatment options are available now and in the pipeline.

Short telomere syndrome is a genetic mutation that has significant implications for MDS and AML patients. This webinar provides an overview of the subject and will address the specific impact for bone marrow failure disease patients. Our speaker, Mary Armanios, M.D., is the Clinical Director of the Telomere Center at Johns Hopkins, Associate Director of Cancer Research Career Enhancement, Sidney Kimmel Comprehensive Cancer Center, Professor of Oncology, Genetic Medicine, Molecular Biology and Genetics, and Pathology as well as an active researcher. Dr. Armanios focuses her research on disorders caused by telomere dysfunction and specific to this webinar, the implications for patients with MDS and AML.

This webinar focuses on the experience of caregivers who have been with their loved ones through the diagnosis, treatment and survivorship stages of bone marrow failure disease. We are grateful to our caregivers for sharing their time with us.  

Carmelita Escalante, MD, is Professor and Department Chair in the Department of General Internal Medicine, Division of Internal Medicine at the University of Texas MD Anderson Cancer Center.  

Dr. Escalante is an active researcher, serving as Principal Investigator on numerous studies related to fatigue and other symptoms in patients with cancer and other conditions including bone marrow failure diseases like aplastic anemia, MDS, PNH and AML.  Dr. Escalante not only teaches, she also serves a mentor for other health care professionals and students in high school and college who are considering a health profession.  

Dr. Escalante's expertise is helping patients, families, caregivers and healthcare professionals understand the impact of disease on patients.

In this webinar, Dr. Escalante discusses the most common side effects that bone marrow failure patients experience from bruising and fatigue to difficulty eating and sleeping. 

Dr. Aditi Shastri, M.B.B.S. is a Hematologist/Oncologist at Montefiore Medical Center and is an Assistant Professor at the Albert Einstein College of Medicine. Dr. Shastri earned her medical degree from Lokmanya Tilak Municipal Medical College and is an experienced clinical researcher in the areas of acute myeloid leukemia, myelodysplastic syndromes, cancer stem cells, transcription factors, STAT3, RNA biology and therapeutic interference and health disparities. Her colleague, Rose Snyder, M.D. will be joining the presentation. Dr. Snyder is with the Jacobi Cancer Center at the Albert Einstein College of Medicine. Sweet Syndrome is associated with MDS in about 20% of cases. This webinar discusses the connection between Sweet Syndrome and MDS, treatment and prognosis.

Dr. Bhatt and Dr. Zimmer discuss important information about how and when to treat infectious disease in patients who have had a transplant. This webinar is appropriate for patients who are contemplating a transplant and those who have already had one. 

Vijaya R. Bhatt, MD, MBBS, is Assistant Professor, Internal Medicine in the Division of Oncology & Hematology and the University of Nebraska Medical Center. Dr. Bhatt sees patients at the Fred & Pamela Buffett Cancer Center where he specializes in hematopoietic stem cell transplant, post-transplant complications, graft-versus-host disease, leukemias, myeloid disorders and benign hematologic disorders. 

Dr. Bhatt is board certified in Hematology and Medical Oncology as well as being a well-regarded researcher.  He has published numerous journal articles, papers and analyses on topics including the treatment of infectious disease in transplant patients. 

Andrea Zimmer, MD, joins the webinar to provide her perspective in infection diseases. Dr. Zimmer is Assistant Professor, Department of Internal Medicine, Co-Director, Graduate Medical Education Curriculum, Microbiology & Infectious Diseases Block at the University of Nebraska School of Medicine.  Dr. Zimmer treats patients at the Fred & Pamela Buffett Cancer Center, providing guidance and support to patients and health care professionals in managing the risks of infectious disease.

Tiffany N. Tanaka, MD, is a board-certified hematologist specializing in the diagnosis and treatment of blood cancers and blood disorders, with an emphasis on myeloid malignancies.  Dr. Tanaka provides an overview of the diagnostic and treatment considerations for patients who have aplastic anemia and hypoplastic MDS.  This overlapping set of bone marrow failure diseases raises critical questions for patients and health care professionals. 

Kathleen Moore, MD is Director, Oklahoma TSET Phase I Program; Associate Professor, Section of Gynecologic Oncology and is an associate professor in the section of gynecologic oncology and serves as the director of the Oklahoma TSET Phase I Clinical Trials Program, the state’s only phase I clinical trials program. She is the Jim and Christy Everest Endowed Chair in Cancer Research as well as the director of the gynecologic oncology fellowship program. She also serves as the Associate Director of Clinical Research and Medical Director of the Clinical Trials Office for the Stephenson Cancer Center. 

Dr. Moore discusses the unique concerns of female patients who develop Secondary MDS/AML after chemotherapy treatment.  This session includes current treatment options as well as a review of what is currently in clinical trial, including Dr. Moore's own work in drug development. 

Swapna Thota, MD joined Roswell Park in 2017 where she specializes in caring for patients with acute leukemias, MDS and other blood cancers. She holds a dual appointment as Assistant Professor of Oncology at Roswell Park Comprehensive Cancer Center and Jacobs School of Medicine and Biomedical Sciences, State University of New York at Buffalo.  Dr. Thota's research focuses on hematologic malignancies, especially on novel drug development to improve outcomes in patients with blood cancers. 

Dr. Thota discusses the complexities of determining the best course of treatment for patients with moderate aplastic anemia. 

During this webinar, Dr. Jamile Shammo from Rush University Medical Center, discusses PNH and special concerns for women. Topics discussed in the webinar are: puberty, birth control, pregnancy, menopause and hysterectomy.

Dr. Steensma explains the relationship between Agent Orange and Myelodysplastic Syndromes in this webinar.

Recorded on October 16, 2018