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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.

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...

7-year-old Little Mermaid fan gets her BMT

Originally Published: 06/11/2016
GEORGETOWN - 7 year-old Yasmin Hernandez is back in Georgetown after spending several months in a North Texas hospital. Yasmin was diagnosed with aplastic anemia last year. This February she received a bone marrow transplant. "We saw her go through all the pain when her legs were hurting," said Yasmin's aunt, Belen Jackson. "And she couldn't move. So this, seeing her here, it's great." Yasmin was surrounded by a sea of family and friends, all anxiously waiting to steal a hug. "It just makes me really happy that so many people care," Yasmin said. The family will continue weekly visits to the...

Brotherly love comes with a BMT match

Originally Published: 06/11/2016
BUFFALO, N.Y. (WIVB) — About a year ago a Kenmore West high school student was diagnosed with a bone marrow failure disorder that could progress into leukemia. Conner Vollmer is a 16-year-old, an outdoorsy kid who enjoys hunting and riding his ATV, but he’s battling a rare blood disease called myelodysplastic syndrome. It’s a group of diseases that affects normal blood cell production in the bone marrow. “It’s a really rare disease, it’s like very rare that it happened, but there’s a cure for it,” said Vollmer. The only known cure is a bone marrow transplant. Before the transplant, Connor...

Foundation Update - June 2016

Originally Published: 06/10/2016
Foundation Update Newsletter - June 2016   Presenting Our 2016 Research Grant Recipients   For over 25 years, AAMDSIF has provided research grants totaling in excess of $4 million to an international group of more than 70 researchers to help advance the understanding and treatment of aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal nocturnal hemoglobinuria (PNH). The two-year grants have helped create new insights into the causes and therapeutic approaches for these diseases. These profiles present the newest group...

Announcing AAMDSIF 2016 Research Awards

Originally Published: 06/09/2016
We are pleased to be able the recipients of the 2016 research awards in bone marrow failure. This year we had dozens of worthy applications and our committee worked diligently to review and score each proposal. The following grantees will each receive an award in the amount of $30,000 to be used to further their research efforts in aplastic anemia, MDS or PNH. In the category of MDS, Tushar Bhagat, Ph.D., a Research Associate at Albert Einstein College of Medicine, received an award for his project; Targeting stromal mediated WNT activation in MDS transformation. Summary Myelodysplastic...

How Much Do You Want to Know About Your Cancer?

Originally Published: 06/01/2016
Your appointment is at 2:00 on a Tuesday afternoon. It’s your first visit to the cancer center. You’re probably wondering what we are going to say to you. A tumor was recently detected in your left lung and has spread to your bones and liver. A biopsy was performed. We’re meeting you for the first time, soon after your primary care doctor, or surgeon, has sat down with you, or called, to tell you some terrible news: You have cancer. We are the oncologists, and we want to help. We want to discuss your diagnosis, what it means and what the options are for treatment. We’d like to give you a...