Newsstand | Page 2 | Aplastic Anemia & MDS International Foundation


Here's where you'll find a regularly updated, broad range of articles written by the AAMDSIF team, allied health organizations and news organizations. By staying well-informed, patients and families are practicing a form of self-support that will help them be more effective self-advocates when engaging with health care providers.

Pegcetacoplan Outperforms Current Standard of Care in Paroxysmal Nocturnal Hemoglobinuria

Originally Published: 06/12/2020
The novel C3 inhibitor pegcetacoplan led to a significant improvement in hemoglobin level and other clinical outcomes at week 16 versus the current standard of care, eculizumab (Soliris) in patients with paroxysmal nocturnal hemoglobinuria (PNH), according to findings from the phase 3 PEGASUS trial, presented ahead of the 2020 European Hematology Association Annual Congress. (continued at link)

Ruxolitinib Improves Outcomes in aGVHD Across Subgroups

Originally Published: 06/12/2020
Ruxolitinib (Jakafi) induced a strong, durable response across several subgroups of patients with steroid-refractory acute graft-versus-host disease (aGVHD), according to data from the REACH2 trial presented at the 25th Annual European Hematology Congress. (continued at link)

Discovery in human acute myeloid leukemia could provide novel pathway to new treatments

Originally Published: 06/02/2020
Researchers at Mount Sinai have discovered that human acute myeloid leukemia (AML) stem cells are dependent on a transcription factor known as RUNX1, potentially providing a new therapeutic target to achieve lasting remissions or even cures for a disease in which medical advances have been limited. (continued at link)

Being a Caregiver for a Patient with Cancer During Quarantine

Originally Published: 05/26/2020
During a recent webinar on COVID-19 that focused on caregivers for patients with cancer, Shera Dubitsky, MEd, MA, Senior Advisor to Sharsheret’s Medical Advisory Board, addressed the topic of traversing the uncharted territory of COVID-19, focusing on caregivers and family members of women with breast or ovarian cancer. “These are very unprecedented times, and we understand the challenge,” said Executive Director Elana Silber, MBA, explaining that Sharsheret’s longtime model is one of remote support.

Foundation Update Newsletter May 2020

Originally Published: 05/20/2020
For you in this issue: National Patient & Family Virtual Conference ♦ National Virtual March for Marrow ♦ Upcoming Webinars ♦ COVID-19 Resources ♦ Hadi Abdur Rasheed Research Fund Reaches $60,000! ♦ Clinical Trial Still Recruiting ♦ Oncology Nursing Month, Military Appreciation Month, and Memorial Day

SF3B1 Variant in MDS Found to Identify Distinct Disease Entities

Originally Published: 05/17/2020
For the first time, an international working group of experts in myelodysplastic syndromes (MDS) proposed the recognition of the SF3B1 variant as a distinct nosologic entity based on the presence of a non-inheritable genetic mutation that causes the disease.1 SF3B1 mutation identifies a condition which is characterized by ring sideroblasts, ineffective erythropoiesis, and indolent clinical course. The report, published in Blood, suggested that the mutation is found in approximately 1 in every 5 patients with MDS. About half of patients with MDS carry somatic mutations, and SF3B1 is the most...

Cancer and Coronavirus Disease 2019 (COVID-19)—Facing the “C Words”

Originally Published: 05/07/2020
By Urvi A. Shah, MD from JAMA Oncology Until now, most people feared a diagnosis with the dreaded “C word”—cancer—owing to its associated physical, emotional, and financial hardships as well as its social stigma. However, the rapid progression of coronavirus disease 2019 (COVID-19) from a local issue to a global pandemic has quickly made it a competitor for the spot of the most feared disease, and rightly so, given the intense strain it is placing on us individually and as a society at every level. For me, having been diagnosed with both diseases 4 years apart, COVID-19 has brought back...

COVID-19 outcomes in patients with hematologic disease

Originally Published: 05/06/2020
To the Editor: Severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) is a novel coronavirus of zoonotic origin that emerged in China at the end of 2019. The infection, named Coronavirus Disease 2019 (COVID-19), is now spreading worldwide. As of April 16, 2020, the virus had affected more than 2,000,000 individuals and resulted in over 125,000 deaths worldwide. Mortality can be as high as 15% in elderly patients, and/or in patients with comorbidities [1, 2]. Based on the current available data, the incubation period (time from exposure to symptom development) is estimated as between 2...

Haploidentical BMT for severe aplastic anemia with intensive GVHD prophylaxis including posttransplant cyclophosphamide

Originally Published: 04/28/2020
Key Points Bone marrow transplantation with posttransplantation CY in severe aplastic anemia results in rapid hematopoietic reconstitution. Rates of graft-versus-host-disease-free survival in treatment-naïve and refractory disease compare very favorably to standard therapies. (Continued at the link)

What's New: Foundation Update Newsletter April 2020

Originally Published: 04/15/2020
In the era of COVID 19 |  Spring Virtual Conference |  March for Marrow Long Beach, CA with Silent Auction- Virtual Version!  |  Spotlight Clinical Trial for Low- or Intermediate-Risk MDS  |  Luspatercept information podcast for MDS treatment  |  Webinar Recordings and AAMDSIF on YouTube Click link for full Update!