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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.

TAKE ACTION NOW: SIGN-ON DEADLINE EXTENDED TO 4/3!

Originally Published: 03/31/2017
Dear Community, We urgently need you to move into follow-up action TODAY. Rep. Doris Matsui has extended the sign-on deadline for our appropriations request to the close of business on Monday, April 3. We want to make this a bipartisan effort, and at this juncture we especially need Republican Members of Congress to sign-on to the Bone Marrow Failure Disease Research Program in the Department of Defense Appropriations for Fiscal Year 2018. To accomplish this sign-on, your Member of Congress should contact Megan Herber in Representative Matsui’s office at megan.herber@mail.house.com or 202-...

PNH Update - March 2017

Originally Published: 03/29/2017
PNH Update - March 2017

Take ACTION NOW! Support federal funding for bone marrow failure research

Originally Published: 03/27/2017
U.S. Rep. Doris Matsui has circulated a “Dear Colleague” letter requesting support for the Bone Marrow Failure Disease Research Program in the Department of Defense Appropriations Bill for Fiscal Year 2018. The text of the letter appears below. Rep. Matsui is seeking to sustain and increase the funding needed to support critically important research. For this request to be successful, Rep. Matsui needs other Members of Congress, both Republican and Democrat, to join her in supporting this request.   We are writing to ask you to reach out IMMEDIATELY to your congressman in the House of...

SAA patient finds unrelated donor match in 2 weeks

Originally Published: 03/21/2017
Chris Vowels spent his police career stopping speeders, educating students on the dangers of drugs and gang violence and talking people out of crisis situations. But for the past 1 1/2 years, the retired Richland sergeant’s lone adversary has been his body. Vowels, 63, is battling severe aplastic anemia — a rare disease in which bone marrow does not make enough blood cells. He’s been in and out of hospitals countless times for transfusions and infections. He is limited to his interaction with loved ones, especially his wife of 43 years and their four grandkids. He has learned to wear a mask...

Identifying bone marrow failure in children

Originally Published: 03/15/2017
Pediatricians face a difficult task in determining when to refer a child for a suspected bone marrow failure syndrome. These different disorders typically have some features in common: low blood counts due to poor blood cell production; congenital anomalies; and cancer predisposition. Only a subset of children with bone marrow failure syndromes will present with the findings described in textbooks, however. These children often appear well and lack classic physical findings. The blood counts may even be normal sometimes or drop only intermittently, but the child remains at risk for...

Transplant saves student who thought she had mono

Originally Published: 03/06/2017
Dana Pelz was just out of college and about to start a job at Johnson & Johnson when she got stunning news: She had a life-threatening blood disorder. Today, she's not only thriving—but helping others get a chance at life through Be The Match. I was at the gym when my doctor called to say there was something very wrong with me and I needed to drive to the emergency room—immediately. Looking back now on that day in December 2013, I should’ve been terrified. But I’d just graduated from the University of Minnesota and landed a job in Johnson & Johnson's Sales Leadership Development...

Oncologists tell the backstory of informed consent

Originally Published: 03/02/2017
We want to let you in on a secret. As your oncologists, we’d like to treat you with two, or three, or four different chemotherapy drugs, each of which has distinct side effects, some of which can kill you. Or, if we were cardiothoracic surgeons, we might tell you that we need to crack your chest open to repair your damaged heart valve, and for that to happen you’ll need to undergo anesthesia from which you may never wake up. As doctors, our goal is to help you, of course, and to do no harm. But we may actually hurt you, irreversibly. Not that this happens frequently, but it might. How does...

Drug reduces acute GVHD in unrelated HSCTs

Originally Published: 02/27/2017
Vorinostat (Zolinza) combined with tacrolimus and methotrexate represents a potentially effective combination to mitigate graft-versus-host disease (GVHD) in the setting of matched unrelated donor myeloablative conditioning hematopoietic stem cell transplant (HSCT).1 In a phase II single-arm study, the cumulative incidence of grade 2-4 acute GVHD at day 100 with the vorinostat combination was 22%, which met the primary endpoint of the study (target incidence of less than 28%). The historical incidence of acute GVHD despite standard immunosuppressive prophylaxis in patients receiving HSCT is...

Aplastic Anemia Update - February 2017

Originally Published: 02/24/2017
Aplastic Anemia Update - February 2017

Advances in antiviral drug cuts infection post SCT

Originally Published: 02/23/2017
  In a significant advance in improving the safety of donor stem cell transplants, a major clinical trial led by researchers at Dana-Farber Cancer Institute and Brigham and Women’s Hospital (BWH) has shown that a novel agent can protect against the most common viral infection that patients face after transplantation. The results represent a breakthrough in a decade-long effort to identify an effective drug for the prevention of CMV infection in transplant patients that doesn’t produce side effects that negate the benefit of the drug itself, the study authors said. The findings, from an...
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