Newsstand | Page 15 | Aplastic Anemia & MDS International Foundation


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 Salutes Its Volunteers During National Volunteer Week!

Originally Published: 04/18/2017
April 23-29 is National Volunteer week – days of acknowledgement set aside each year for organizations to honor those who give selflessly of their time and talent to support the causes they care about. To help us accomplish many of our programs, events and services for the bone marrow failure community, we rely heavily on our dedicated volunteer base of over 500 patients, families and health professionals. Here’s who they are and what they do to keep AAMDSIF moving forward. Medical Advisory Board (MAB) This outstanding group of over 20 medical and research professionals are leaders in their...

Be The Match needs African American donors

Originally Published: 04/11/2017
Thousands of people living with leukemia, sickle cell anemia and other blood cancers and disorders know that a cure is within reach. But for these patients, the cure isn't a "what" - but a "who." Finding the "who" can be quite challenging, especially for African Americans. This is because they have the most diverse genetic tissue types compared to other ethnicities. Bone marrow donation offers a rare opportunity for people outside of the medical community to save lives. The Be The Match Registry® connects potential donors willing to give their bone marrow to patients with blood diseases....

Overcoming age barrier to transplantation

Originally Published: 04/03/2017
Since the earliest days of modern cancer care, the scientific community has waged a war against the ravages of this disease on multiple fronts. We've sought to increase survival for patients through prevention and early detection. We've worked toward improved methods of surgery, radiation, and chemotherapy in hopes of slowing or eradicating cancer's spread. And we've developed lifesaving, even curative treatments for cancers that were once considered a death sentence. Today, we wage a battle on a different though no less important front: working to ensure public policy keeps pace with...


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 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...