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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.

Aplastic Anemia Update - August 2016

Originally Published: 08/19/2016

Taming the nausea, vomiting caused by chemo

Originally Published: 08/11/2016
A drug currently used to treat several psychiatric conditions can help prevent nausea and vomiting in patients receiving chemotherapy, according to results from a large NCI-funded phase III clinical trial. Patients in the trial were being treated with chemotherapy agents that often cause substantial nausea and vomiting. Those who were randomly assigned to receive the drug olanzapine (Zyprexa®), given in combination with three standard antiemetic agents (drugs that help prevent nausea and vomiting), were far less likely to experience nausea, have vomiting episodes, or need “rescue” anti-...

Foundation Update - August 2016

Originally Published: 08/10/2016
Foundation Update Newsletter - August 2016   Advancing Clinical Trials Through Expanded Patient Input AAMDSIF is committed to improving the clinical trials process for the benefit of patients and researchers alike. Dr. Ellen Salkeld, our Director of Research, recently offered an update on the Foundation’s progress with the PACCT+ program since it was established a year ago. Learn more about PAACT+, and what the pharmaceutical industry is doing to spur recruitment for clinical trials.   Learn Online With AAMDSIF Webinars Register now...

Watch STORY CORNER videos to meet patients

Originally Published: 08/05/2016
Watch STORY CORNER videos to meet patients.

Read our latest newsletter, Health Professionals UPDATE

Originally Published: 07/28/2016
Health Professionals - Update Summer 2016

Young BMT patients get moving with Pokemon craze

Originally Published: 07/21/2016
MILWAUKEE -- The Pokémon Go craze has caused distractions that have led to injuries. But at Children's Hospital of Wisconsin, it's the distraction that makes the app worth playing. A challenge between doctor and patient to find Pokémon characters -- it's not what you would expect to find at Children's Hospital. But Dr. David Margolis is loving its beneficial effects on his patients. For one, it lets kids be kids. "So what if he just had a bone marrow transplant -- we can do it within the rules," Dr. Margolis said. Secondly, it plays a role in the healing process. "He won't realize that he's...

Congress discusses BMT accessibility

Originally Published: 07/08/2016
For people with leukemia, lymphoma and other blood diseases, there is good news. Bone marrow transplants are saving lives—often curing these life-threatening illnesses. Unfortunately, out of date Medicare coverage rules are restricting access to bone marrow transplants solely on the basis of age. Hence, a patient who is 64 years old will likely receive a much-needed transplant, while a 65-year-old may not. Determining who is eligible for this life-saving treatment should not be done by arbitrary age requirements. Lawmakers need to change this illogical age cut off and let doctors decide who...

Foundation Update - July 2016

Originally Published: 07/08/2016
Foundation Update Newsletter - July 2016   Presenting Our 2016 Scholarship Winners                                   AAMDSIF has awarded $20,000 in college scholarships to four students through the Matthew Debono Memorial Scholarship Program. There were 36 applicants this year from 19 states, each of whom has been diagnosed with a bone marrow failure disease. The Review Committee selected the recipients based on academic standing, work, volunteer activities and personal essays.  All of the applicants are winners in their battle with...

Self-injected PNH therapy on the horizon

Originally Published: 07/07/2016
Akari Therapeutics plc CEO Gur Roshwalb told BioWorld Today that his firm "like[s] to think we'll be second to market" with once-daily, self-injected therapy Coversin for paroxysmal nocturnal hemoglobinuria (PNH), behind intravenous (I.V.) Soliris (eculizumab, Alexion Pharmaceuticals Inc.), given every other week. Coversin would be delivered by way of an "insulin-like" injector pen, he said, acknowledging "a lot of concern [among investors] with trying to go in front of the FDA with a drug-device combo" but saying the device would be an off-the-shelf item. "I don't think we have to re-invent...

2016 Scientific Symposium Patient Summary

Originally Published: 07/06/2016
The AAMDSIF 2016 Scientific Symposium Patient Summary is now available in print format. Containing 33 lay language summaries of presentations from a panel of international experts, this 24-page publication presents the latest  in bone marrow failure research. Sections are: •    Genomics of Bone Marrow Failure •    Genetics of Bone Marrow Failure •    Pathophysiology and New Molecular Targets of Bone Marrow Failure •    Immunobiology of Bone Marrow Failure •    Round Table: Developing Therapies for the Developing World •    Transplant Treatments for Bone Marrow Failure •    Non-Transplant...