Patient and Family Webinars

AAMDSIF Medical Advisory Board members Mikkael Sekeres, MD, Valeria Santini, MD and Uwe Platzbecker, MD provide a global update on COVID-19 including important reminders to patients about how to keep themselves safe and the prospective vaccines that are in development.

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 is an accessible yoga session with examples of chair, standing and floor poses. We invite you to watch this session and participate as you are able, but please be sure to consult with your healthcare team before beginning any exercise program. We are thankful to Jenny Finkel for joining us for this session. More information about our yoga instructor can be found on her website:  https://www.jennyfinkelyoga.com/

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. Guillermo Garcia-Manero is with the University of Texas MD Anderson Cancer Center where he serves as Chief, Section of Myelodysplastic Syndromes, Deputy Chief, Translational Research and heads up the MDS/AML MoonShot program. Dr. Garcia-Manero also serves on the AAMDSIF Medical Advisory Board. In this webinar, he reviews the most promising research presented at the 2020 European Hematology Association and American Society of Clinical Oncology meetings.

Charles J. Parker, M.D., is Professor of Medicine in the Division of Hematology and Hematologic Malignancies, Department of Internal Medicine, at the University of Utah, the Huntsman Cancer Center Institute and the George E. Whalen Medical Center in Salt Lake City, Utah. Dr. Parker's clinical interests include paroxysmal nocturnal hemoglobinuria and he is among the top PNH researchers in the world. Previously, Dr. Parker served as the President of the International Paroxysmal Nocturnal Hemoglobinuria Interest Group (IPIG) and he is currently Editor-in-Chief of The Hematologist.

Dr. Parker discusses the connection between aplastic anemia and PNH including the diagnostic process, treatment options and prognosis. Approximately 1/3 of all aplastic anemia patients may develop PNH so this webinar will be useful to patients with either (or both) diagnoses.

Dr. Cheng provides an overview of Bronchiolitis Obliterans Syndrome which can occur after hematopoietic stem cell transplantation (HSCT) and is a rare type of obstructive lung disease of the small airways. Diagnosing this condition and then managing it can be a challenge for patients and families. 

Chemo brain is how many patients and their loved ones describe the cognitive and memory problems that can occur during and after treatment for bone marrow failure disease. Sometimes called chemo fog, cognitive impairment or cognitive dysfunction, this side effect can be difficult for patients to navigate. This webinar discusses how chemo brain is diagnosed and treated.

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. Mims provides an overview of the latest treatment options in pipeline for High-Risk MDS and AML patients including several promising clinical trials that may be suitable for patients. 

A stem cell transplant for pediatric patients is the only curative option for many bone marrow failure diseases. Dr. David Jacobsohn of Children's Hospital gives a thorough presentation for patients and their families to understand the long term effects of this lifesaving treatment including secondary cancers and fertility issues. This is a "must watch" session for anyone who has undergone a transplant as a pediatric patient or for those who are considering this treatment option.  

Dr. Stefanie Thomas and Taylor Buss, Pediatric Oncology Social Worker (Cleveland Clinic), lead a panel discussion with two young adult patients with bone marrow failure disease, discussing their treatment journeys, the challenges and successes they've faced.  

Seth Corey, MD, MPH (Cleveland Clinic), led an informative session for patients of all ages about the causes of bone marrow failure diseases like aplastic anemia, PNH, MDS and AML. Dr. Corey explains the difference between acquired and genetic disease, how that difference can affect treatment options and prognosis.

Rabi Hanna, MD (Cleveland Clinic) helps aplastic anemia patients and families understand the treatment options including new thinking on transplants from alternative donors for patients with acquired aplastic anemia. Dr. Hanna will also gives an update on the most promising developments currently in clinical trial. 

Dr. Seth Rotz and Taylor Buss (Cleveland Clinic) lead a panel discussion with two patients, Paige and Justin who were diagnosed with bone marrow failure disease while they were teenagers or young adults, underwent treatment and are now survivors. Dr. Rotz gives an overview of what characteristics he sees in his most successful patients and then Taylor Buss asks questions of our survivors - from dating to life as a young professional.

Hetty Carraway, MD (Cleveland Clinic) leads an informative session for MDS patients who want to know more about how genetic mutations can affect treatment options and how doctors evaluate the risk of MDS progression based on international criteria.

Staci Arnold, MD, MBA, MPH (Emory University) shares her extensive research on what quality of life outcomes are most important to bone marrow failure disease patients and families and how to make your life better during diagnosis, treatment and survivorship.