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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.

Foundation Update - April 2017

Originally Published: 04/18/2017
Foundation Update Newsletter - April 2017   AAMDSIF Salutes Its Volunteers During National Volunteer Week! April 23-29 is National Volunteer week -- days set aside each year to acknowledge volunteerism and honor those who give their time and talent to support causes they care about. We don’t take our dedicated community of volunteers for granted – and this month’s National Volunteer Week gives us yet another occasion to thank them for their service to AAMDSIF. Learn more about our dedicated volunteer groups.   April 21 is World AML Awareness...

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...

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...

When a common cold is uncommonly perilous

Originally Published: 03/22/2017
The common cold can be deadly for patients recovering from bone marrow transplants, a new study warns. After a bone marrow transplant, patients have weakened immune systems. This puts them at risk for infections that aren't a major threat to healthy people. But until now, the common cold (rhinovirus) had been overlooked in these patients, according to Dr. Michael Boeckh. He is an infectious disease specialist at the Fred Hutchinson Cancer Research Center in Seattle. "This is such a prevalent virus . . . about 25 percent of stem cell transplant patients get infected [with rhinovirus] during...

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...

Foundation Update - March 2017

Originally Published: 03/16/2017
Foundation Update Newsletter - March 2017 Solving Emma's Diagnostic Mystery In January 2016, my 9 year-old daughter Emma turned yellow. After seeing her regular doctor, we were sent straight to the hospital. They found that her liver enzymes were extremely elevated and sent us to a second hospital. After extensive blood panels and scans, they still couldn’t determine the cause of Emma’s liver inflammation, and so the process to find her a new liver began. We returned home because of signs that Emma was doing better, but we had to follow a very stringent regimen that...

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...