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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.

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...

Swabbing leaps into the record books, sort of

Originally Published: 10/04/2016
If you were in New York on September 16 and 17, you may have seen an unusual sight: a giant cotton swab traveling around Manhattan! This unique item was the brainchild of Gift of Life Community Engagement Coordinator Russell Lowe, who had a vision: build the world’s largest cotton swab in honor of World Marrow Donor Day on September 17, and invite GUINNESS WORLD RECORDS ™ to certify it as the Largest Cotton Swab. The official certification by GUINNESS WORLD RECORDS of the largest cotton swab.Russell and his team of friends and family began work in August designing and building the giant swab...

Q&A with PNH expert Dr. Bart Scott

Originally Published: 09/23/2016
Read our latest interview with Dr. Bart Scott as he discusses PNH.

Happy BMT Birthday, Robin Roberts!

Originally Published: 09/20/2016
"Good Morning America” co-anchor Robin Roberts is celebrating her fourth “birthday,” as she likes to say. It’s been four years since Roberts received a life-saving bone marrow transplant to treat myelodysplastic syndrome or MDS, a rare blood disorder. Throughout her difficult journey, Roberts remained resilient thanks to her beloved mother's refrain, "Everybody's got something." She held onto that phrase like a mantra. Now, Roberts, who started her career in the radio booth at WFPR in Hammond, Louisiana, is coming full circle to launch an intimate and compelling podcast called "Everybody's...

Foundation Update - September 2016

Originally Published: 09/16/2016
Foundation Update Newsletter - September 2016 New! MarrowStrong Awareness Campaign Kicks Off With DC Event Patients, families and healthcare professionals – lend us your ears!  We're introducing MarrowStrong, a multi-faceted, overarching awareness campaign designed to elevate our profile, expand public support for patient programs, fund research, improve treatments, and ultimately, find a cure for bone marrow failure diseases. This national campaign will officially launch on December 10 with a March for Marrow 5K Run & Walk in Washington, D.C. Find out about...

Heroic avatars for rare disease patients

Originally Published: 09/14/2016
Alexion Pharmaceuticals, Inc. (ALXN) today announced the launch of Uncommon Strength, a global campaign to raise awareness of rare diseases through the celebration of the extraordinary resilience and inner strength of those impacted by these diseases. Uncommon Strength (www.UncommonStrength.com) supports global rare disease communities, including those impacted by atypical hemolytic uremic syndrome (aHUS), paroxysmal nocturnal hemoglobinuria (PNH), hypophosphatasia (HPP), and lysosomal acid lipase deficiency (LAL-D) with educational information as well as interactive social media elements to...

PNH Update - September 2016

Originally Published: 09/08/2016

AAMDSIF in San Diego 9/17

Originally Published: 09/07/2016
Sept. 6, 2016        Contact: Barbara Holzer, holzer@aamds.org, (301) 279-7202, x106 After Misdiagnosis by Renowned Institution, Local Woman Gets New Lease on Life Thanks to Specialist at UC San Diego Health ROCKVILLE, MD – Seventy-four year old Anne Wells led a very active, independent life until two-and-a-half years ago, when she suddenly became so weak that she could no longer take care of herself. “It was a very scary time for me, but even more so for my children,” she said. Her daughter came from Colorado to look after her, but when she couldn’t wake her mother up one day and had to...