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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.

MDS Update - November 2016

Originally Published: 11/01/2016
MDS Update - November 2016

AAMDSIF Expands its International Presence

Originally Published: 10/28/2016
For the first time in the Foundation’s history, AAMDSIF participated in medical conferences in Latin America. On Oct. 20 and 21, CEO Kathleen Weis attended the Fifth Annual Symposium on MDS presented in Lima, Peru, held by Grupo Latinoamericano De Sindromes Mielodisplásicos (GLAM), the continent’s largest association of hematologists/oncologists specializing in MDS. The event focused primarily on MDS clinical updates, patient registries, transplantation and related bone marrow failure diseases. As one of the conference’s sponsoring organizations, AAMDSIF hosted a table with educational...

AAMDSIF 2016 Grant Recipients, Part One

Originally Published: 10/27/2016
Meet Researchers Supported by AAMDSIF AAMDSIF’s named research funds make it possible for young investigators to delve into the biology of bone marrow failure disease and contribute their findings to the body of scientific work that, one day, will add up to a cure.  This is the first of a 3-part series on our 2016 grant recipients, and today we’re introducing you to two of them who are both investigating aplastic anemia. Kate MacNamara, studying at Albany Medical College in New York, proposed a study on the relationship between excessive inflammation and the destruction of stem cells that...

Nurses’ Live Surprise for Robin Roberts

Originally Published: 10/26/2016
Get ready for some tears. Robin Roberts has openly discussed her battle with cancer and bone marrow disease in the past, and even confessed that there was a point when she felt "completely alone," but she can't deny the wonderful assistance she got from some special nurses. During a special nurses' hour episode of Harry with Harry Connick Jr. (airing tomorrow), Roberts was surprised with a special appearance by two nurses who helped treat her during the Good Morning America co-anchor's 30-day stint in the hospital. But not before Roberts emotionally recalled her time in treatment. "...

Experts expound on iron overload in MDS

Originally Published: 10/19/2016
Transcript: Heather Leitch, MD, PhD: One of the things that’s difficult for patients to understand about iron is there really aren’t any acute adverse effects of iron overloads. So, it’s not something they can feel that’s adversely affecting them until we know things are really out of control. The long-term effects, however, are inevitable. And so, these include not only iron overload in the organs such as the liver and the heart, which can lead to organ failure, it also can be detrimental to the endocrine organs and the bone marrow, leading to worsening of bone marrow failure. But other...

Team Julia’s Wings at the Kent Pumpkin Run!

Originally Published: 10/14/2016
Come Join Team Julia’s Wings at the Kent Pumpkin Run!

MDS World Awareness Day

Originally Published: 10/13/2016
MDS World Awareness Day was created to spread awareness and educate others about MDS around the world. This year, the MDS Alliance has launched a worldwide campaign called Here to Help MDS which will officially launch on October 25th. The aim of this campaign is to raise awareness of MDS and The MDS Alliance network. We strongly encourage you to embrace the campaign and participate in it from wherever you are. What Can You Do? As part of the Here to Help MDS Campaign, we would like you to join us in partnering with your local pilates, yoga and/or dance groups to videotape them performing to...

10/29 March for Marrow walk in historic Williamsburg, VA

Originally Published: 10/11/2016
Registration is OPEN for the Tartan Trailblazers: March for Marrow Walk/5K Fun Run Williamsburg! Do you live in or near the Williamsburg area? We’d like to invite you to participate with other patients, families and friends in the March for Marrow Walk! This is a unique opportunity to connect with others directly affected by a bone marrow failure disease while also helping to spread public awareness in your community. This uplifting program benefits an important rare disease community. It’s also a meaningful and healthy way to spend the morning. Festivities include team photos, light...

Documentary “Mixed Match” highlights multiracial, minority transplants

Originally Published: 10/10/2016
  Athena Mari Asklipiadis started the California-based Mixed Marrow in 2009 after her aunt passed away from lymphoma. Asklipiadis — who is multiracial like her aunt — saw firsthand the complications multiracial people face when trying to find a bone marrow donor, she told NBC News. She also realized many people did not know how difficult it was for multiracial people to find donors. To help convince people to register to possibly donate, Asklipiadis worked with Canadian filmmaker Jeff Chiba Stearns to produce a new documentary, "Mixed Match", which made its premiere this week at the...

Wrapped! Another Excellent PNH Event

Originally Published: 10/06/2016
A Great Day to March and Walk Nearly 200 PNH patients and their families, friends and supporters gathered on Sunday, Oct. 2, at Riverside Park in New York City for the 11th Annual March for Marrow/Walk for PNH. The event is the nation’s single largest fundraiser dedicated to patient support and medical research to find new treatments and a cure for PNH disease. By all accounts, the Walk was a great success. “It’s truly inspiring to see so many people whose lives have been impacted by PNH united together in one place” said Erin Olivier, a member of the Walk for PNH event team and whose father...
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