Patient and Family Webinars

Ilene Weitz, MD, is an assistant professor of clinical medicine at the Keck School of Medicine at the University of Southern California (USC). Her practice sites include, LAC+USC Medical Center, Keck Hospital of USC and USC Norris Cancer Hospital. Dr. Weitz is board certified in Internal Medicine and Hematology.  This webinar focuses on the latest in research presented at the 2019 American Society of Hematology (ASH) Annual Meeting held at the end of 2019. Dr. Weitz has selected a number of abstracts (research summaries) and provides a high level assessment of new and ongoing research into treating aplastic anemia and/or PNH. Participants were able to submit questions during the presentation and Dr. Weitz' responses are at the end of the webinar recording. 

Mikkael Sekeres, MD, MS discusses issues related to the impact of COVID-19 on the care of bone marrow failure patients including the importance of patients remaining at home even as more areas reduce restrictions, adapting to telemedicine, and resuming treatments that may have been delayed.

This webinar is an excerpt from a longer webinar entitled "Understanding the Overlap between MDS and MPNs" and has been edited accordingly. Dr. Mesa gives an overview of the specific concerns that patients with the overlapping conditions of MDS and MPNs have related to the coronavirus (COVID-19) pandemic. 

Dr. Mesa discusses the overlap between MDS (myelodysplastic sydromes) and MPNs (myeloproliferative neoplasms), including diagnosis and treatment options including the latest in clinical trials. He also provides an update on the impact of COVID-19 on patients with MDS/MPNs overlap syndrome.

Rami Komrokji, MD, of Moffitt Cancer Center in Tampa, Florida, addresses the concerns of low-risk MDS patients and their caregivers and reviews the precautions they should be taking to protect their health during the COVID-19 pandemic. The webinar recording features patient-submitted questions.

Rami Komrokji, MD, Moffitt Cancer Center, Florida, provides a comprehensive overview of lower risk MDS from diagnosis to treatment. Dr. Komrokji focuses on how hematologists and oncologists use different tools to assess the risk for patients when diagnosed with MDS including an overview of IPSS-R. He also explains how this assessment tool is only useful prior to treatment and that after interventions, other assessment tools are used by healthcare professionals to provide guidance and support to patients, families and caregivers. Dr. Komrokhi further discusses the treatment landscape including the newly announced luspatercept and several prospective treatments in the pipeline/clinical trial phase. 

Veronica Dioverti Prono, MD, Johns Hopkins School of Medicine , Baltimore, provides an update on the COVID-19 (novel coronavirus) pandemic as it relates to patients, families and caregivers dealing with bone marrow failure disease. Dr. Prono gives practical advise on how to avoid exposure to the virus and answers questions from a live audience. 

Twyla Jackson, RDN, LDN, CNSC, Northside Cancer Center, Atlanta, provides an overview of the dietary and nutritional concerns facing patients, families and caregivers dealing with bone marrow failure disease. Ms. Jackson provides evidence-based, scientifically accurate guidance including specific concerns related to potential interactions between certain treatment medications and specific foods. She also provides important information on the use of supplements and a healthy, active lifestyle. Ms. Jackson works closely with hematologists and oncologists in her role at Northside Cancer Center in Atlanta and this presentation includes specific questions from patients at the end. 

Hemant Murthy, MD, Mayo Clinic Jacksonville, Florida, provides a comprehensive overview of the risks and benefits of bone marrow transplant for patients with bone marrow failure disease including aplastic anemia, PNH, MDS and AML. This sessions includes a review of the generalized criteria for eligibility, the potential complications of transplant and long-term outcomes based on ongoing studies. Dr. Murthy also offers hopeful news for older patients who may have thought they were not eligible for transplant but with new treatment protocols may be able to at least consider this option. Dr. Murthy answered a number of patient-submitted questions at the end of the presentation. 

Jamile Shammo, MD, FASCP, FACP, Rush University, Chicago, provides an update on the latest in diagnosing and treating PNH including a discussion about Soliris and Ultomiris as well as several new treatments that are in clinical trials and are showing promise for patients with this rare disease. Dr. Shammo also answered a number of patient-submitted questions. 

Daniel Pollyea, MD, MS, University of Colorado Health, gives a comprehensive overview of what happens when a higher risk MDS patient transitions to AML including the diagnositic criteria, treatment options and outcomes assessments. Dr. Pollyea also reviews some of the most promising treatment options that are in clinical trial and/or new to the treatment space. He also discusses the increasing success rates for older patients who go to transplant as a curative treatment for High Risk MDS and AML. Dr. Pollyea answers a number of patient-submitted questions as well. 

Shyamala Navada, MD, MSCR, Mount Sinai Hospital, New York, provides an overview of the diagnosis and treatment of aplastic anemia and an update on new treatment options that are in the clinical trial and study phase. Dr. Navada also answers patient-submitted questions.

The COVID-19 pandemic has brought many changes to how  we live our lives,. It has brought uncertainty, altered daily routines, financial pressures, and social isolation.

In this webinar, Dr. Timothy Pearman from Northwestern University Feinberg School of Medicine and Jenny Finkel from Jenny Finkel Yoga discuss self-care strategies for patients, families and caregivers which can improve emotional health and wellness and empower participants during this difficult time. Jenny and Dr. Pearman also demonstrate accessible yoga practices which you can do at home to help keeping you moving and help relieve stress. 

In this webinar, Dr. Amer Zeidan from Yale Cancer Center discusses research most relevant to patients reported over the past year on the biology and treatment on MDS and secondary AML. These studies were presented at the American Society of Hematology (ASH) 2019 meeting in Orlando, Florida.

Research findings are explained along with the potential impact of this research on understanding and treating MDS and AML.

In this webinar, Dr. Deeg addresses the pre and post transplant concerns of bone marrow failure patients and their caregivers and reviews the precautions they should be taking to protect their health, particularly during this pandemic.

Our apologies, but this webinar had some technological challenges during the presentation and the sound quality is not ideal. We will also provide a transcript of the session which should provide clarity on the responses from Dr. Deeg to the questions submitted during the Q & A portion of the webinar. 

This webinar with Gail Roboz, MD, addresses the concerns of high-risk MDS or secondary AML patients and their caregivers and reviews the precautions they should be taking to protect their health. Patients, families and caregiver questions are included at the end of the presentation. 

Dr. DeZern and Dr. Dioverti address the concerns of bone marrow failure disease patients and their caregivers and review the precautions they should be taking to protect their health.
They also answer participant questions and answers.

Dr. Hofmann and Dr. Margolis will discuss the specific concerns related to COVID-19 for pediatric bone marrow failure patients and their parents, including pre- and post-transplant issues.   

There will be an opportunity for questions and answers via the webinar platform. 

Our presenter is Carlos M. De Castro, MD, a cell therapy and hematologic malignancies specialist who sees patients at Duke Cancer Institute in Durham, NC.  Dr. De Castro is a Professor of Medicine at Duke University School of Medicine and a member of the AAMDSIF Medical Advisory Board.  

Dr. De Castro addresses the specific concerns of aplastic anemia and PNH patients related to COVID-19.  This is a pre-recorded webinar in which patients, family members and caregivers were able to submit questions to the presenter.