Newsstand | Page 15 | Aplastic Anemia and MDS International Foundation

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.

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 Unfortunately, out of date Medicare coverage rules are restricting access to bone marrow transplants solely on the basis of age.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...

AAMDSIF partners on new MDS patient resource

Originally Published: 06/28/2016
FORT WASHINGTON, PA — Myelodysplastic syndromes (MDS) are the result of genetic alterations that cause blood stem cells to become abnormal, rendering bone marrow unable to create new, mature blood cells for release into the body. It is estimated that up to 15,000 new cases of MDS are diagnosed in the United States each year and that up to 75,000 Americans are living with MDS.i To provide insight on MDS for patients and caregivers, the National Comprehensive Cancer Network® (NCCN®) has published the NCCN Guidelines for Patients® and NCCN Quick Guide™ for MDS. These resources are provided...

New study reveals microbes’ role in GVHD

Originally Published: 06/20/2016
Researchers from the University of Chicago have shown that microbiota -- the bacteria, viruses and other microbes living on the skin and in the digestive system -- play an important role in the body's ability to accept transplanted skin and other organs. In a June 20 study, published in The Journal of Clinical Investigation, the team demonstrated that skin grafts between mice treated with antibiotics prior to transplantation survive roughly twice as long as mice that didn't receive the medications. Grafts between mice raised in a sterile, germ-free environment also survived longer. Meanwhile...

ABC’s Robin Roberts’ heartfelt MDS talk

Originally Published: 06/19/2016
Robin Roberts cried while discussing her battle with cancer at the Cannes Lions Festival. The GMA anchor wiped away tears as a clip was played from her ABC special “Robin Roberts’ Journey” of the aftermath of her her bone marrow transplant in 2012, as her hair stylist Petula Skeete’s shaves her head and then sings sweetly to her. Dabbing her eyes with a tissue, Roberts, 55, said, “That particular moment is what people commented on and appreciated most – you need to see the vulnerability, it is not the easiest to show you are down on your knees.” But she said showing her emotion on TV helped...

Major news in BMT with half-match donors

Originally Published: 06/13/2016
DALLAS – June 13, 2016 – Texan Chuck Dandridge became the first adult in the U.S. to receive a newly modified stem cell transplant that uses genetically engineered blood cells from a family member, announced researchers at UT Southwestern Medical Center’s Harold C. Simmons Comprehensive Cancer Center where the procedure was performed. The new genetically engineered blood cells were transplanted from his son, Jon, and thanks to the procedure, Mr. Dandridge’s leukemia is in remission. “Giving my dad the same gift of life that he gave me when he brought me in this world was the most amazing...