Team Telomere made Community Chats to be safe spaces for those in the Telomere Biology Disorder community to connect with others, ask questions to experts in the fields, and learn more about TBDs. Each chat has an overarching theme, and individuals can register in advance to attend chats.
February 21, 2023 – 7pm ET
Bone Marrow Transplants & Therapies – Dr. Kasiani Myers, MD
We know that approaching conversations around Bone Marrow Transplants and Therapies can be overwhelming and complex. During this family chat, you will have the opportunity to ask any questions and learn more information. Dr. Kasiani Myers, who is the Director of the Hematopoietic Stem Cell Transplant Late Effects and Survivorship Program at the University of Cincinnati and Cincinnati Children’s Hospital Medical Center, will lead this chat. She has much experience in approaching bone marrow failure, bone marrow transplantation, and related acute and late complications. She also is the Principal Investigator for the industry-sponsored clinical trial for the evaluation of telomere elongation with EXG34217 in patients with Telomere Biology Disorders with bone marrow failure (NCT04211714). We look forward to connecting with you and connecting you.
March 14, 2023 – 7pm ET
Liver – Dr. Ryan Himes, MD
Liver complications in those with Telomere Biology Disorders have recently become better recognized and understood. Liver involvement may include abnormal liver tests, significant cirrhosis, hepatopulmonary syndrome, and hepatocellular carcinoma. Dr. Ryan Himes, a pediatric hepatologist (liver disease specialist) at Ochsner Health in New Orleans and Clinical Assistant Professor at Louisiana State University Health Science Center-Shreveport, is interested in the liver manifestations of telomere biology disorders and the role of liver transplantation for select patients. Join this family chat for a highly informative session and a safe space to ask any questions that you may have related to this topic.
April 11, 2023 – 7pm ET
Young Adult – Dr. Tim Olson, MD, PhD
Young adults, we see you and we hear you. Young adults with Telomere Biology Disorders (TBDs) face unique medical and psychosocial challenges. From those who were diagnosed in early childhood and are navigating the transition from pediatric to adult care while balancing personal aspirations to those diagnosed as adolescents or young adults who are integrating the information of diagnosis into their day-to-day lives, this Family Chat offers you a space to ask young-adult specific questions and connect with other young adults in the community. The chat will be led by Dr. Tim Olson, who cares for those with TBDs and conducts research to improve treatment for these patients.
June 13, 2023 – 7pm ET
Genetic Counseling – Ann Carr, MS, CGC
There are currently 1815 genes known to be associated with Telomere Biology Disorders; with more research, this list is expected to grow. Genetic considerations and information can be complex and difficult to navigate. Genetic counselors help individuals determine needed genetic testing, understand genetic risks, and discuss the medical and emotional implications of genetic information. Ms. Ann Carr, Board Certified by the American College of Medical Genetics and the American Board of Genetic Counseling, works as a genetic counselor contracted to the Clinical Genetics Branch of the National Cancer Institute (NCI). Her integrations of genetic counseling and laboratory experiences make her an incredible resource for our Telomere Biology Disorder community.
September 19, 2023 – 7pm ET
Pulmonary – Dr. Chad Newton, MD
It is now well-recognized that pulmonary fibrosis can be a Telomere Biology Disorder complication. Dr. Chad Newton treats and researches the role of telomere and telomere maintenance in pre- and post-lung transplant outcomes. Bring all of your questions surrounding pulmonary clinical presentations, diagnostics, treatment, and lung transplantation to this family. This Family Chat creates a safe space where you can voice any questions or concerns while making meaningful connections with other community members.
October 10, 2023 – 7pm ET
HH, Revesz, Coats – Dr. Alison Bertuch, MD, PhD
Telomere Biology Disorders (TBDs) exist on a clinical spectrum, meaning individuals diagnosed with a TBD have different clinical presentations. For example, Hoyeraal Hreidarsson syndrome (HH), Revesz syndrome (RS), and Coats plus arise from changes in telomeres. This Family Chat gives the space for you to ask questions and learn more about these syndromes from Dr. Alison Bertuch. Dr. Bertuch, an associate professor of pediatrics and molecular and human genetics at Baylor College of Medicine in Houston, Texas, directs the Bone Marrow Failure Program at Texas Children’s Cancer and Hematology Centers, is a member of the Telomere Biology and Cancer Genomics Program, and researches mechanisms of telomere structure and function. We are grateful for the expertise she brings to serve our community!
November 14, 2023 – 7pm ET
Hematologic – Dr. Mrinal Patnaik, MBBS
Many individuals diagnosed with a Telomere Biology Disorder (TBD) have some hematologic manifestations, including asymptomatic cytopenias (i.e. low blood counts), symptomatic bone marrow failure, myelodysplastic syndrome, or acute myeloid leukemia. The screening, medical management, and treatment approach to these manifestations must be uniquely tailored to individuals with TBDs. Dr. Mrinal Patnaik, a Professor of Internal Medicine at the Mayo Clinic, Division of Hematology, has a strong interest in Telomere Biology Disorders. He leads multidisciplinary clinical and laboratory efforts to provide comprehensive care for patients with Telomere Biology Disorders. He is a fantastic resource to bring your questions to and to learn from.
December 5, 2023 – 7pm ET
Diagnostics – Dr. Sharon Savage, MD
There are important considerations in rendering a diagnosis of a Telomere Biology Disorder (TBD). Dr. Sharon Savage, Chief of the Clinical Genetics Branch in the Division of Cancer Epidemiology and Genetics at the National Cancer Institute (NCI), and Dr. Geraldine Aubert, Director of Clinical Development and Research at RepeatDx, are here to answer all your questions about TBD diagnostics from telomere length testing to genetic testing. Join us for a highly informative and resourceful family chat.