DCO hosts monthly family chats and invites a medical doctor or researcher to join us. This provides you with an amazing opportunity to ask any questions you may have of a medical care provider who has knowledge of Dyskeratosis Congenita and Telomere Biology Disorders and the symptoms, tests and treatments that are recommended. Don't feel you have to join in, there are always plenty of questions and if you feel more comfortable listening, you are of course still welcome to join. If you cannot make the call, but wish to ask questions, please send them via email.
To join the meeting, email Katie Stevens at email@example.com so she can send you an invitation with the meeting’s call-in details.
Sunday, November 12th, 2017 @ 8pm EST Timothy S. Olson, M.D. - hosted by Bruce Friedman
My clinical efforts focus on pediatric hematopoietic stem cell transplantation (HSCT), with a specific emphasis on HSCT for patients with inherited and acquired bone marrow failure. Through my combined clinical activities in the Bone Marrow Failure Center within the Division of Hematology and the Blood and Marrow Transplant Section within the Division of Oncology, my goal is to facilitate outstanding care for patients with inherited bone marrow failure and acquired aplastic anemia during their transition from diagnostic evaluation to treatment through HSCT.
In coordination with these clinical efforts, my clinical research program seeks to retrospectively and prospectively assess outcomes for patients undergoing HSCT due to inherited and acquired bone marrow failure syndromes, defined and stratified by distinct cytogenetic abnormalities. Our ultimate goal is to develop targeted clinical trials which will serve to define optimal treatment strategies for patients with distinct genetic and immunologic etiologies of bone marrow failure.
The goal of my laboratory research program is to improve HSCT outcomes by identifying methods to decrease the incidence of graft failure following HSCT, which is a particularly critical challenge in the setting of transplant for non-malignant conditions such as bone marrow failure. We are specifically examining methods to enhance donor hematopoietic stem cell (HSC) engraftment efficiency following HSCT through enhancement of the functions of specialized areas of the bone marrow microenvironment, known as hematopoietic stem cell niches. We are currently testing therapeutic strategies that can be applied to enhance niche activity and receptivity for donor stem cells, which could be utilized to improve donor engraftment efficiency following clinical HSCT.
Family Chat schedule for 2017
All times eastern
Sunday, December 10, 2017, 8 p.m., Dr. Sharon Savage - hosted by Katie Stevens
Sunday, January 14, 2018, 8 p.m., Dr. Drew Dietz - hosted by Lisa Helms Guba
Sunday, February 11th, 2018, 8 p.m., Dr. Fred Goldman
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Shan Terry"Science didn't understand my kids' rare disease until I decided to study it." - Sharon Terry
Smart Patients is an online community for patients and families affected by a variety of illnesses. Here you can learn at your own level about scientific developments related to your condition, share your questions and concerns with other members, and use what you learn in the context of your own life.
Introduction to the DC/ TBD Patient Survey
To schedule time to chat about the survey, contact firstname.lastname@example.org. We welcome any comments, questions or suggestions!