family / friend
External Resources
This is a list of many resources that may be helpful to patients and their families dealing with a bone marrow failure disease.
MDS Toolkit
Pevonedistat plus azacitidine may increase survival for myelodysplastic syndrome, AML
Community Rallied around Braeden's Family as he Fought Aplastic Anemia --- Now Family "Pays it Forward"
Person's Name:
Braeden Hahn
“Hey, Braeden, we need to go.”
Little did 12-year-old Braden understand that he was headed towards hospital admission.
Earlier that day, Braden nearly passed out on the basketball court. He was a happy, athletic child, who excelled at several sports. His mom, Becki, took him for blood work.
Later, Braeden’s parents heard from the doctor’s office: take him to the Emergency Department now. That’s when Braeden’s dad came to pick him up from his friend’s house, where he’d been playing normally.
Bone Marrow Disease(s):
Content source:
MY 12-YEAR BATTLE WITH MDS - By Jane Biehl PhD
Person's Name:
Jane Biehl, Ph.D.
I had an article published in 2017 by AAMDSIF and was asked to update everyone. I will briefly reiterate the first part of my journey and then move forward!
Bone Marrow Disease(s):
Content source:
Dr. Eunice Wang discusses Secondary MDS
Dr. Eunice Wang explains the origin and treatment of secondary MDS. Dr. Wang is the Chief of the Leukemia Service at Roswell Park Comprehensive Center.
Dr. David Steensma discusses MDS and toxins with Leigh Clark, Patient Educator
Dr. David Steensma discusses MDS and toxins with Leigh Clark, Patient Educator. Dr. Steensma is an associate professor at Harvard Medical School and faculty member in the leukemia program at the Dana-Farber Cancer Institute and Brigham and Women's Hospital in Boston, Massachusetts and the Edward P. Evans Chair in MDS at Dana-Farber Cancer Institute
Haploidentical BMT for severe aplastic anemia with intensive GVHD prophylaxis including posttransplant cyclophosphamide
Key Points
Guidance for Bone Marrow Failure Patients to Protect Against Coronavirus (COVID-19)
This content has been prepared in consultation with AAMDSIF Medical Advisory Board Chair Mikkael Sekeres MD, MS of Sylvester Comprehensive Cancer Center, University of Miami and Co-Chair Olatoyosi Odenike MD of the University of Chicago with additional review by Amy DeZern, MD, Johns Hopkins and Carlos De Castro, MD, Duke. ( November 2022)