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Newsstand

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.

MDS Update - February 2017

Originally Published: 02/01/2017
MDS Update - February 2017

MDS expert finds promising antibody

Originally Published: 01/25/2017
A protein-sugar molecule, CD99, occurs more frequently than normal on stem cells responsible for blood cancers, including acute myeloid leukemia (AML) and the related myelodysplastic syndromes (MDS). This is the finding of a study led by researchers from NYU Langone Medical Center and Memorial Sloan Kettering Cancer Center, and published online Jan. 25 in Science Translational Medicine. Building on this discovery, the study authors designed an antibody that recognizes and destroys CD99-covered leukemia cells while sparing normal blood stem cells, a finding confirmed by experiments in human...

Foundation Update - January 2017

Originally Published: 01/19/2017
Foundation Update Newsletter - January 2017   How Does Bone Marrow Failure Disease Affect Pregnancy? Dr. Ellen Friedman has been the Hematology Fellowship Director of Montefiore Medical Center/Albert Einstein College of Medicine since 2005. She completed a fellowship in hematology at New York University, specializing in the conditions of red cells, platelets and hematologic malignancies. Her research has focused on a variety of blood conditions including anemia, thrombocytopenia, and myelodysplastic syndrome. Read Dr. Friedman's remarks about pregnancy and bone...

DC Walk a Winner Despite Wicked Cold

Originally Published: 01/18/2017

AAMDSIF Merger with PNHF Finalized

Originally Published: 01/13/2017
Dear Community, This month, AAMDSIF finalized its merger with the PNH Research and Support Foundation that we first announced to you on Nov. 1. When nonprofit allies share a long history of successful engagement for the same cause, it stands to reason that they’ll get married someday. After years of close collaboration, it was clear to both organizations that by joining forces, we will become stronger together – as well as more efficient and effective in the services and support we provide to our patients and families. In much the same way that each of you are stronger by virtue of being...

New positive results for GVHD treatment

Originally Published: 01/12/2017
The targeted cancer therapy ibrutinib (Imbruvica®) can effectively treat a common and serious complication of a type of stem cell transplant, findings from a small clinical trial show. Patients in the trial had blood cancers and were experiencing symptoms of chronic graft-versus-host disease (GVHD) after receiving a transplant of donated blood stem cells, known as an allogeneic transplant. The patients’ symptoms—including widespread skin rashes and painful mouth ulcers—had persisted despite standard treatment with corticosteroids. Following treatment with ibrutinib, approximately two-thirds...

Rare disease topic tackled by World Economic Forum

Originally Published: 01/12/2017
Responsive and responsible leadership is the central theme of this year’s World Economic Forum meeting in Davos. For the biopharma industry, I believe our core contribution is innovation: we must focus on developing new medicines that address unmet medical needs and deliver value for all of those affected. Rare diseases pose a significant medical and economic burden for patients, communities and healthcare systems. A rare disease, sometimes referred to as an orphan disease, is any disease that affects a small percentage of the general population. In the US, a condition is considered rare...

Dr. Dave rocks at Childrens Hospital of Wisconsin

Originally Published: 01/05/2017

Foundation Update - December 2016

Originally Published: 12/15/2016
Foundation Update Newsletter - December 2016   AAMDSIF Active at ASH 2016 At the December 2016 American Society of Hematology (ASH) meeting, AAMDSIF interacted with thousands of hematology professionals from around the world. Among our many activities, we held our satellite symposium, engaged attendees at our exhibit booth, met with our Medical Advisory Board, and facilitated a meeting of our MDS Clinical Research Consortium (CRC).     Recent AAMDSIF Patient Webinars >Understanding...

AAMDSIF Activities at ASH 2016

Originally Published: 12/14/2016
Satellite Symposium For the 9th consecutive year, AAMDSIF sponsored a satellite symposium at ASH in partnership with Cleveland Clinic. This year’s symposium, “Clinical Management of MDS/MPN:  A Mountain of Evidence for Treatment Selection in MDS/MPN” provided an in-depth review of research related to the biology, prognosis, natural history and therapeutic management of patients with MDS, MPN and MDS/MPN overlap.  The CME-accredited webcast of the symposium will be available online in early 2017. Interviews with some of the symposium faculty were recorded by AAMDSIF so the presenters could...