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The conference will occur over two days - Friday, July 19 from 2-7 PM ET and Saturday, July 20 from 8AM - 4 PM ET. This conference will provide sessions for both adults and children. At the hotel, parking is valet only and paid by AAMDSIF. Conference location - The Inn at Penn @ 3600 Sansome Street Philadelphia, PA 19104Conference Event last updated April 1, 2024.Node ID (debugging only): 10487
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Dr. Mikkael Sekeres describes why patients should request a second opinion about their bone marrow failure disease or blood cancer. He also shares his own perspective about asking for a second opinion, recommending that patients do select this option.Podcast Episode last updated September 21, 2023.Node ID (debugging only): 10335
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Thank you for attending the 2023 Salt Lake City Patient and Family Conference. We will keep uploading presentations as we receive them, please keep checking back for updates. Presentation Materials: Predisposition to Inherited Bone Marrow Failure Syndromes Aplastic Anemia and Non-Transplant Therapies MDS and Non-Transplant Therapies PNH and Non-Transplant Therapies Ask the...Conference Event last updated August 3, 2023.Node ID (debugging only): 10287
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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...Article last updated May 30, 2023.Node ID (debugging only): 9940
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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...Article last updated May 30, 2023.Node ID (debugging only): 9935
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BOSTON--(BUSINESS WIRE)--Aug. 1, 2022-- Gamida Cell Ltd. (Nasdaq: GMDA), the leader in the development of NAM-enabled cell therapy candidates for patients with hematologic and solid cancers and other serious diseases, announced today that the U.S. Food and Drug Administration (FDA) has accepted for filing the Company’s Biologics License Application (BLA) for omidubicel for the treatment of...Article last updated May 30, 2023.Node ID (debugging only): 10016
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When should patients be vaccinated, and with which version of the COVID-19 Vaccine? Learn all about how each type of vaccine works and which patients with bone marrow failure diseases should be vaccinated.Podcast Episode last updated May 30, 2023.Node ID (debugging only): 10096
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What is a clinical trial? Why should a patient consider participating in one? Olga Rios, RN, offers a brief explanation in this recording.Podcast Episode last updated November 21, 2022.Node ID (debugging only): 10083
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Christina Cline, RN, at the University of Florida Health Cancer Center, describes one of the common symptoms of treatment for bone marrow failure diseases: fatigue. Learn how patients can communicate about their fatigue with their health care team as well as which strategies may help.Podcast Episode last updated November 21, 2022.Node ID (debugging only): 10082
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Learn all about the risks, benefits, and side effects of the transplantation process.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8332
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H. Joachim Deeg, MD, is a board certified oncologist at Seattle Cancer Care Alliance, a University of Washington Professor of Medicine and Oncology and a researcher at Fred Hutchinson Cancer Research Center.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8253
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Imagine being ready to launch your career, then being thrown off course by both aplastic anemia and PNH, all at once! Listen to Sarah's story of her path to survivorship here.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8222
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Why would I choose a clinical trial? What kind of additional care would I receive? How do I know if I qualify? Christina Cline, RN, BSN, CCRC, explains both patient and nurse navigator roles in this recent recording.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8470
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Senior Director of Health Professional Programs, Alice Houk, describes how your health care team can become your Partner toward health in this interview.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8175
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This is the first episode of our new podcast. Leigh Clark, Patient Educator, describes the bone marrow failure journey and how AAMDSIF can help!Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8157
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"Three hours after they drew my blood, my doctor called to tell me to go immediately to the emergency room!" Because Kirollos was a pharmacy student, he understood that having such low blood counts needed fast treatment, but he was still surprised. Discover how he progressed from diagnosis to transplant to survivorship quickly here.Podcast Episode last updated November 2, 2022.Node ID (debugging only): 8180
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Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science accessible and empower rare disease community members with scientific knowledge. Dr. Brown has over a decade of experience in neurodevelopmental research and is currently the Scientific Director for TESS...Article last updated February 18, 2022.Node ID (debugging only): 9917
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Beginning September 2012, I just wasn’t feeling quite right. I was increasingly fatigued and there were some perplexing bleeding incidents, as well. After many months I experienced partial vision – just little areas of vision that were blank. Internal bleeding in the eyes was causing this, and my eye doctor knew it was serious and even thought it could be leukemia. Blood tests were done, and when...Patient Chronicle last updated February 16, 2022.Node ID (debugging only): 7753
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September 16 through December 20 will stand out in Ashley’s mind. Forever. These are the days she spent in the hospital with her feisty three-year-old, Alayna, for conditioning and bone marrow transplant. The summer of 2019 was already big with a wedding to plan. The toddler and her baby brother were enjoying everything that small ones do, including riding dirt bikes with Daddy. When an unusual...Patient Chronicle last updated February 16, 2022.Node ID (debugging only): 8640
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Veronica learned that delaying treatment was not a good idea. That delay nearly ended her life. In 2018, Veronica was a busy mom, working full time, leaving the house at 5:30 a.m., returning at 5:30 p.m. She stayed healthy by working and staying active. She is a busy mom of two young children, and all the normal activities of modern life. One day, she thought she caught a bad flu, so she stayed...Patient Chronicle last updated February 10, 2022.Node ID (debugging only): 8665