Patient and Family Webinars

Dr. Cutler will discuss the many new advances in transplantation for patients with bone marrow failure diseases including treating GVHD post-transplant, the criteria by which patients are advised to consider transplant and the outcomes that patients who go to transplant can expect.  This is an especially relevant topic for those patients who are considering transplant now or in the near future. 

Dr. DeZern and Dr. Dioverti will provide a update on the global pandemic and the impact on patients with bone marrow failure conditions. 

This session will focus on answering the questions that patients, family members and caregivers have about vaccinations against COVID-19 for those living with bone marrow failure conditions.  

Participants will be able to submit their questions during the session via the Q & A window and we will do our best to get to all live questions.  To submit a question in advance, please send an email to help@aamds.org. 

Dr.DiNardio provides a review of the most important papers and studies presented at the 62nd American Society of Hematology Annual Meeting for patients with AML secondary to MDS.  We will have a follow up webinar with a direct focus on lower and intermediate risk MDS papers and studies. 

Courtney D. DiNardo is an Associate Professor, Department of Leukemia, Division of Cancer Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX.  Dr. DiNardo is a clinical researcher with a specialized focus on prognostication and personalized therapeutics for patients with myeloid malignancies. She has completed formal training in epidemiology and biostatistics, with a Master's of Science in Clinical Epidemiology (2012). She is the principal investigator for multiple novel therapeutic agents currently in clinical trial and was involved in the clinical development of venetoclax for myeloid malignancies.  Dr. DiNardo is an internationally recognized researcher and clinician. 

Dr. Cook gives a broad overview of bone marrow disorders including what causes them, how they are diagnosed and what treatment paths are available to patients.

Dietician Joanna Myers Casale provides a brief overview of recommended dietary needs for bone marrow failure patients and then answers questions posed by the audience.   

Joanna Myers Casale is a registered dietician who serves as Oncology Dietician at the MD Anderson Cancer Center at Cooper in Camden, New Jersey.  She earned a B.S. in Clinical Dietetics & Nutrition from the University of Pittsburgh where she graduated magna cum laude. Ms. Casale is a board certified specialist in oncology nutrition by the Commission on Dietetic Registration. 

At the MD Anderson Cancer Center at Cooper, Ms. Casale works with hematology and oncology patients to support them during their treatment and reduce side effects. She also educates her patients on foods to support their immune system and recovery.  

She is a member of the American Society for Parenteral and Enteral Nutrition and the Academy of Nutrition and Dietetics, including the Oncology Nutrition Practices Group.  

Dr. Navada discusses the overlap between MDS and PNH including the diagnosis process and best practices in treatment.  While this is a very rare overlap, it's important for MDS and PNH patients to be aware of the possibility. Participants will have the opportunity to ask questions during the session.

Shyamala Navada, MD, is Associate Professor of Medicine (Hematology and Medical Oncology) at the Icahn School of Medicine at Mount Sinai (Icahn) and a faculty member of The Tisch Cancer Institute.  She has served as principal investigator on multiple investigator-initiated and industry-sponsored trials. Dr. Navada earned her M.D. from the University of Illinois and holds a Master of Science degree in Clinical Research from Icahn.

Dr. Navada has presented her research at national and international conferences, including the American Society of Hematology annual meeting, International Bone Marrow Failure Disease Scientific Symposium, International Symposium on Myelodysplastic Syndromes, and European Hematology Association Congress. 

Dr. Navada will be joining the AAMDSIF Patient Education Council in 2021 as an expert advisor on the Foundation's educational programming. 

Dr. Arellano gives a presentation treating older adults with acute myeloid leukemia (AML) including a review of the newest treatment options, how healthcare professionals determine what the best treatment plan is for older adults and what the prognosis is for patients diagnosed with AML.  

Martha L. Arellano, MD, is an Associate Professor in the Department of Hematology and Medical Oncology at the Emory University School of Medicine where she serves as Interim Associate Director in the Division of Hematology.  Board certified in hematology, medical oncology and internal medicine, Dr. Arellano specializes in the treatment of leukemia and myelodysplastic syndromes. She started practicing with Emory Healthcare in 2006.

Dr. Arellano is a clinical member of the Discovery and Developmental Therapeutics Research Program at Winship Cancer Institute of Emory University. She currently leads the Department of Hematology and Medical Oncology's Fellowship program.

Dr. Arellano earned her medical degree from Emory University School of Medicine in Atlanta, Georgia. She went on to complete her internship and residency at Emory University Hospital in Atlanta, Georgia. 

Dr. Arellano's areas of research interest include adoptive immunotherapy for hematopoietic malignancies, novel therapies for acute leukemias and myelodysplastic syndromes, and palliative and supportive care.

Mikhail Kogan, Medical Director of the GW Center for Integrative Medicine, gives an updated presentation on how complementary and alternative therapies can be used to help bone marrow failure disease patients. Participants 

Mikhail Kogan, MD, ABIOM, RCST is a leader in the newly established field of Integrative Geriatrics.  He is the chief editor of the first definitive textbook of the field "Integrative Geriatric Medicine" and is a regular speaker on the subject at international conferences.  He serves as the Medical Director of the GW Center for Integrative Medicine and is associate director of the Geriatrics Fellowship Program.  

Leigh Clark, AAMDSIF Patient Educator, leads a panel of MDS patients to discuss their patient journey.  This interactive panel covers everything from diagnosis and clinical trials. Join Shirley O'Brien and Lou Auerbach for a lively discussion about their experiences!

Leigh Clark, AAMDSIF's Patient Educator, moderates a panel of bone marrow failure disease patients (and parent) who have had a transplant as part of their treatment journey. They discuss how they made the decision to have the transplant, what side effects they've experienced and how they're doing today.

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.

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.