Team Telomere Family Chats
January 17, 2022 – 7pm ET
Coats Plus – Dr. Suneet Agarwal, MD, PhD & Dr. Tim Olson, MD, PhD
“Telomere Biology Disorders” is a term used to describe a spectrum of illness that are all joined by changes in telomere biology. Coats plus falls under this spectrum and clinical features may include the classical mucocutaneous triad and bone marrow involvement as well as intracranial calcification, retinal telangiectasia, osteopenia, gastrointestinal hemorrhages, intrauterine growth restriction, etc. This month’s Family Chat is a wonderful opportunity to connect with other families with Coats Plus and Telomere Biology Disorders. Dr. Tim Olson and Dr. Suneet Agarwal, who are both experts in the care of those with Coats Plus and related Telomere Biology Disorders, will answer questions and provide important education.
February 8, 2022 – 7pm ET
Bone Marrow Transplants – Dr. Suneet Agarwal, MD, PhD
Hematopoietic Cell Transplantation (HCT) – also known as Bone Marrow Transplant (BMT) – can cure blood defects, such as bone marrow failure (BMF), myelodysplastic syndrome (MDS), and leukemia in those with Telomere Biology Disorders (TBDs). Whether you would like to learn more about planning for HCT, transplant timeline, or post-HCT care, this Family Chat gives you the opportunity to ask your questions and connect with Dr. Suneet Agarwal and other families. Dr. Agarwal, Assistant Professor in Pediatrics at Harvard Medical School, leads a multi-center bone marrow transplant clinical trial for patients with TBDs. He also conducts research on new treatments and cures for TBDs.
March 8, 2022 – 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 safe space to ask any questions that you may have related to this topic
April 12, 2022 – 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 who are navigating the transition from pediatric to adult care while balancing personal aspirations to those diagnosed as an adolescent or young adult 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.
May 10, 2022 – 7pm ET
We are extremely excited to present a very special Family Chat. This chat will be run in Camp Sunshine style. Our entire Medical Advisory Board will be present to answer questions and guide discussion. This is an incredible, one of a kind opportunity to learn and grow from some of the brightest minds in the field of Telomere Biology Disorders.
June 14, 2022 – 7pm ET
Genetic Counseling – Ann Carr, MS, CGC
There are currently 15 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 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 of our Telomere Biology Disorder community.
September 13, 2022 – 3:30pm ET
Pulmonary – Christine Garcia
More information about this family chat coming soon.
October 11, 2022 – 7pm ET
General – Dr. Alison Bertuch, MD, PhD
From discussing diagnostic tools, and clinical features to screening, management and treatment options, this Family Chat gives the space for you to ask questions you may have and learn more about Telomere Biology Disorders from Dr. Alison Bertuch. Dr. Bertuch, a Professor of Pediatrics, in the Division of Hematology/Oncology 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. Her laboratory studies the molecular genetics of the Telomere Biology Disorders. We are grateful for the expertise she brings to serve our community!
November 8, 2022 – 7pm ET
Adult – Dr. Mrinal Patnaik, MBBS
Adults with Telomere Biology Disorders require appropriate screening, holistic care, and proper management and treatment. Dr. Mrinal Patnaik, an Associate Professor of Internal Medicine at the Mayo Clinic, Division of Hematology, has a strong interest inTelomere Biology Disorders, especially in the adult population. He launched a program for excellence for Telomere Biology Disorders with 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 13, 2022 – 7pm ET
Newly Diagnosed – Dr. Sharon Savage, MD
Being newly diagnosed with a Telomere Biology Disorder (TBD) can be scary and isolating. Team Telomere wants you to support you in whatever way we can, including connecting you to helpful information and resources. Dr. Sharon Savage, the Chief of the Clinical Genetics Branch in the Division of Cancer Epidemiology and Genetics at the National Cancer Institute (NCI), leads an inherited bone marrow failure syndromes study, and her work has helped understand the clinical complications of TBDs, better diagnose TBDs, discover four genes associated with TBDs, and learn more about telomere biology. This Family Chat creates a safe space where you can voice any question or concerns that you may have and make meaningful connections with other families.
Our Families Stories blog is being updated. If you have a story or experience you would like to share with others, or if you have an update for your story, please contact us.