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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.

Spring MDS Update 2022

Originally Published: 05/01/2022
Article Source: MDS Update

The Rise of the Expert Patient in Cancer: From Backseat Passenger to Co-navigator

Originally Published: 03/28/2022
Article Source: External Web Content
PURPOSE: Patients who have cancer have leveraged the Internet to gain a better understanding of their disease and connect across geographic boundaries with others facing the same challenges. Online cancer communities have developed into resources that highlight new research and evolving care pathways. Combined with increasing health literacy and social media, they have enabled some patients to become experts in their cancer. This combination of empowerment and expertise describes the new “e-patients.” Article continues at link.

Living in an online world: Social media experiences of adolescents and young adults with cancer

Originally Published: 03/16/2022
Article Source: External Web Content
Abstract Background Despite widespread use, little is known about how adolescents and young adults (AYA) with cancer use social media (SM). This research characterized use and self-reported SM experiences among AYA with cancer. Procedure AYA, aged 12-26 years, receiving cancer care completed a mixed-methods survey regarding SM experiences. Clinical information was obtained from the electronic medical record. Data were analyzed with descriptive statistics, t tests, and qualitative content analysis. Results Thirty-nine AYA with average age 16 (SD = 3.2) years participated. Most were Caucasian...

Student view: Donor diversity saves lives

Originally Published: 03/16/2022
Article Source: External Web Content
Editor's note:  Here's an update on Mychaela (see Stories of Hope) Mychaela Lovelace is a sophomore at Michigan State University majoring in kinesiology in the College of Education, and is a scholar and mentor in the Dow STEM Scholars Program. On April 1, 2008, at the age of 5 I was diagnosed with severe aplastic anemia, which is a rare condition that occurs when your body stops producing enough new blood cells. About two in every, 1 million people in the United States are diagnosed with the disease each year. After being diagnosed, I knew, even at the young age of 5, that I was going to...

Seeing Cancer From All Sides: Richard M. Stone Is Giant of Cancer Care in Leukemia

Originally Published: 03/11/2022
Article Source: External Web Content
Driven by his mother’s advice and his father’s memory, Richard M. Stone, MD, rose to become a global leader in leukemia care and research. Growing up, Richard M. Stone, MD, thought he was going to be an attorney like his father, but his direction in life changed when he was 15. His father, Benjamin, developed kidney cancer when Stone was just 5 years old, and 10 years later, the disease metastasized and took the man’s life. Stone says he went from being middle class to poor rapidly after his father died. “And that sort of gave me the incentive to work hard,” he said. Stone was an only child...

MDS Update Winter 2022

Originally Published: 02/28/2022
Article Source: MDS Update
Please click on the link above to view the full update!

Aplastic Anemia and MDS International Foundation Announces 2021 Research Grant Recipients

Originally Published: 02/11/2022
Article Source: Press Release
FOR IMMEDIATE RELEASE Aplastic Anemia and MDS International Foundation Announces 2021 Research Grant Recipients (BETHESDA, MD) February 11, 2022. The Aplastic Anemia and MDS International Foundation announces the two recipients of the 2021 Research Awards. For over 30 years, AAMDSIF has provided financial support for research that leads to new insights into the causes of bone marrow failure diseases and to the development of new therapeutic approaches. Since 1989 we have awarded over $5 million in funding 98 grantees. “Supporting early career investigators is an investment in the future,”...

Research Identifies How Gene Mechanisms Influence Pediatric MDS

Originally Published: 01/31/2022
Article Source: External Web Content
Each year, approximately 1 in every 1 million infants is diagnosed with pediatric myelodysplastic syndromes (MDS), a group of rare disorders characterized by the abnormal or deficient formation of blood cells in the bone marrow. However, researchers wanted to understand the underlying mechanisms behind this condition. In the past, both SAMD9 and SAMD9L mutations have been linked to pediatric MDS; in fact, approximately 8% of pediatric patients with MDS have one of these mutations. According to the University of Texas Health Science Center at San Antonio, a research team recently learned more...

Eltrombopag inhibits TET dioxygenase to contribute to hematopoietic stem cell expansion in aplastic anemia

Originally Published: 01/27/2022
Article Source: External Web Content
Eltrombopag, an FDA-approved non-peptidyl thrombopoietin receptor agonist is clinically used for the treatment of aplastic anemia, a disease characterized by hematopoietic stem cell failure and pancytopenia, to improve platelet counts and stem cell function. Eltrombopag treatment results in durable tri-lineage hematopoietic expansion in patients. Some of the eltrombopag hematopoietic activity has been attributed to its off-target effects including its iron chelation properties. However, eltrombopag mechanism of action is still poorly understood with respect to its full spectrum of clinical...

Structural Racism is a Mediator of Disparities in Acute Myeloid Leukemia Outcomes

Originally Published: 01/21/2022
Article Source: External Web Content
Key Points Structural racism (SR) assessed by census tract variables accounts for nearly all Black-white and Hispanic-white disparity in AML survival. Structural Racism is a stronger mediator of survival disparities than molecular features, co-morbidities, healthcare access and treatment. Non-Hispanic Black (NHB) and Hispanic patients with acute myeloid leukemia (AML) have higher mortality rates than non-Hispanic white (NHW) patients despite more favorable genetics and younger age. A discrete survival analysis was performed on 822 adult AML patients from six urban cancer centers and revealed...
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