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.

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...

Dr. Dave rocks at Childrens Hospital of Wisconsin

Originally Published: 01/05/2017

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...

MDS Clinical Research Consortium Meets at ASH 2016

Originally Published: 12/14/2016
Just before the active program of the annual American Society of Hematology (ASH) meeting kicked in, AAMDSIF and members of the MDS Clinical Research Consortium (MDS CRC) took the opportunity to meet with partners and friends. Several pharmaceutical researchers interested in clinical research in MDS joined the MDS CRC principal investigators for refreshments and discussion at the reception we hosted. The Cleveland Clinic’s Mikkael Sekeres. M.D., co-chair of the consortium, gave a brief presentation about the history, current operations and future plans of the CRC for event attendees. The...

MDS/AML patients benefit from novel study

Originally Published: 12/08/2016
Patients who potentially could benefit most from participation in clinical trials due to poor prognoses often are not included based on eligibility criteria, such as existing medical illnesses. A novel study at The University of Texas MD Anderson Cancer Center revealed some patients with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS), who traditionally could not be considered for clinical trials, responded well and were safely treated in this setting. The study, led by Guillermo Garcia-Manero, M.D., professor of Leukemia, followed 109 patients with AML and MDS undergoing...

Passage of the 21st Century Cures Act

Originally Published: 12/08/2016
The 21st Century Cures Act finally passed this week with overwhelming bipartisan support. In May 2015, the proposed legislation (H.R. 34) was introduced in the U.S. House of Representatives, with the goal of promoting the development and speeding the approval of new drugs and devices. Experts at the New England Journal of Medicine believe its provisions could have a profound effect on what is known about the safety and efficacy of medical products, as well as which ones become available for use. President Barack Obama has indicated that he would sign the bill into law as soon as it reached...

AAMDSIF to make news at ASH Conference

Originally Published: 12/01/2016
November 30, 2016 Contact: Barbara Holzer, holzer@aamds.org, (301) 279-7202, x106 Alice Houk, houk@aamds.org, 301-279-7202 x101 Pharma, Docs Can Now Put Their Mouth Where Their Money Is; Patient Advocacy Group to Hold Swabbing Event at ASH AAMDSIF to Include Be-The-Match Drive at its ASH Exhibit Booth BETHESDA, MARYLAND – On Dec. 3 when the doors open at the 58th Annual Meeting of the American Society of Hematology (ASH) in San Diego, the world’s largest professional association of clinicians and scientists working on blood diseases will provide its huge crowd of attendees with a beehive of...

Local TV covers AAMDSIF Peer Support Networker

Originally Published: 11/28/2016
Those who know me know that I am a big mixed martial arts (MMA) fan. Huge. MMA is a rare but growing sport that requires one person to persevere through hard work and sacrifice while relying on a team of individuals working behind the scenes to keep the fighter as healthy as possible for their next battle. Sound familiar?   So, it came as no surprise to learn that one MMA fighter is battling a rare disease and that battle is making him stronger. UFC fighter Joe Ellenberger began fighting in MMA while at the University of Nebraska at Kearney where he was studying industrial distribution and...

Like AAMDSIF, HHS now provides more info on clinical trials

Originally Published: 11/22/2016
In an effort to make information about clinical trials widely available to the public, the U.S. Department of Health and Human Services today issued a final rule (link is external) that specifies requirements for registering certain clinical trials and submitting summary results information to ClinicalTrials.gov. The new rule expands the legal requirements for submitting registration and results information for clinical trials involving U.S. Food and Drug Administration-regulated drug, biological and device products. At the same time, the National Institutes of Health has issued a...