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.
Rare-X Enrollment Virtual Community Picnic
March 15th, 2025 – 4 PM ET
Join Team Telomere on March 15, 2025, at 1 PM PST for a RARE-X Enrollment Virtual Community Picnic! This interactive event offers a chance to connect with the community, get step-by-step support for your RARE-X enrollment, and learn how contributing data can help accelerate research and treatment advancements for Telomere Biology Disorders (TBDs). As a special bonus, Team Telomere community members will receive a snack box to enjoy during the event! Don’t miss this opportunity to make an impact in rare disease research while building meaningful connections. Have questions? Email kstratton@teamtelomere.org for more details.
Liver Complications in Telomere Biology Disorders – Dr. Ryan Himes
March 20, 2025 – 7PM ET
Liver complications in those with Telomere Biology Disorders can span a range of presentations. These complications can include cirrhosis (a late stage of progressive liver fibrosis, or scarring), non-cirrhotic portal hypertension, hepatopulmonary syndrome, hepatocellular carcinoma, and others. In some cases, liver disease is the first or only sign of a TBD. Join Dr. Ryan Himes, MD, a pediatric hepatologist at Ochsner Health in New Orleans and Clinical Assistant Professor at Louisiana State University Health Science Center-Shreveport, for this Community Chat discussion on liver manifestations in TBDs and the role of liver transplantation.
Open Forum: Young Adults – Jena Robertson
April 1, 2025 – 7PM ET
Join us for our April Community Chat, hosted by community member Jena Robertson! This open forum is designed specifically for young adults in the TBD community to connect, share experiences, and support one another. If you’re a young adult looking to build community, we’d love to have you join. For those outside this age group, we encourage you to explore our other community chat options!
April Legacy Chat – Cat Wilsnack
April 24, 2025 – 7PM ET
Join us for our April Legacy Chat. Legacy Chats are a safe, supportive space for members of our community who have lost a loved one to a Telomere Biology Disorder. This gathering offers a chance to connect, share memories, and support one another in a compassionate and understanding environment. This chat will be hosted by Catherine (Cat) Wilsnack, MSW, LMSW, a licensed social worker with expertise in counseling individuals and families living with rare disease. During her fellowship, Cat was a research coordinator and investigator on multiple studies, most notably one study about telomere biology disorders, which is how she became connected to the TBD community. She is currently a doctoral candidate at the University of Texas at Austin Steve Hicks School of Social Work where she is actively working on her dissertation. Whether you are looking for comfort, connection, or simply a space to reflect, you are welcome here.
Bone Marrow Failure & Telomere Biology Disorders – Dr. Timothy Olson
May 6, 2025 – 7PM ET
Bone marrow failure is a potential complication of Telomere Biology Disorders. Bone marrow failure impacts the body’s ability to produce healthy blood cells. Screening, medical management, and treatment approach to bone marrow failure should be tailored for individuals impacted by TBDs. Join Dr. Timothy Olson, MD, PhD, a pediatric hematologist and researcher at Children’s Hospital of Philadelphia, as he discusses the complexities of BMF in TBDs. This chat will provide expert insight on BMF in TBDs while giving an opportunity to ask questions in a supportive space.
Bone Marrow Transplantation & Emerging Therapies – Dr. Suneet Agarwal
June 17, 2025 – 7PM ET
Approaching conversations around Bone Marrow Transplants and Therapies can be overwhelming and complex. Bone marrow transplantation remains a critical treatment option for some individuals with TBDs but comes with unique challenges. Questions often arise on topics including donor selection, transplant conditioning, and possible complications. Community Chat provides an opportunity to ask about all aspects of bone marrow transplantation, as well as ongoing research into emerging therapies. Dr. Suneet Agarwal, MD, PhD is a pediatric hematologist at Boston Children’s Hospital and Dana-Farber Cancer Institute as well as a researcher at Harvard Medical School. He is also the lead on a multicenter bone marrow transplant trial and works on developing new treatments for telomere diseases.
Open Forum: Adults – Jena Robertson
September 2, 2025 – 7PM ET
Join us for our April Community Chat, hosted by community member Jena Robertson! This open forum is designed specifically for adults in the TBD community to connect, share experiences, and support one another. If you’re an adult looking to build community, we’d love to have you join. For young adults and those outside this age group, we encourage you to explore our other community chat options!
Pulmonary Complications in Telomere Biology Disorders – Dr. Mary Beth Scholand
September 16, 2025 – 7PM ET
Pulmonary fibrosis and other lung complications can impact individuals with Telomere Biology Disorders. This Community Chat will be led by Dr. Mary Beth Scholand, MD, an expert in interstitial lung disease and pulmonary fibrosis as well as the founder of University of Utah’s Interstitial Lung Disease Center. Bring your questions surrounding pulmonary clinical presentations, diagnostics, treatment, and lung transplantation to community chat.
Genetics & TBD Subtypes – Dr. Alison Bertuch
October 7, 2025 – 7PM ET
There are several genes that have been identified as being related to Telomere Biology Disorders (TBDs). While genetic considerations can be complex and difficult to navigate, this information is vital for those impacted by TBDs. Additionally, 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 Community Chat gives the space for you to ask questions and learn more about TBD genetics and subtypes from Dr. Alison Bertuch MD, PhD. Dr. Bertuch, a pediatric hematologist at Baylor College of Medicine and Texas Children’s Cancer and Hematology Centers, directs the Bone Marrow Failure Program and studies the molecular mechanisms of TBDs.
Open Discussion on Telomere Biology Disorders – Roundtable with the Team Telomere Medical Advisory Board
November 4, 2025 – 7PM ET
This Community Chat is an open discussion with members of Team Telomere’s Medical Advisory Board (MAB), where participants can ask about any aspect of TBDs, from diagnosis and disease management to the latest research and advocacy efforts. This is a unique opportunity to engage directly with leading experts in TBD research and clinical care while gaining insight into the evolving landscape of TBDs.
The Skeletal System & Telomere Biology Disorders – Dr. Kasiani Myers
December 2, 2025 – 7PM ET
Individuals with TBDs may experience a higher prevalence of skeletal complications. Some of these complications include avascular necrosis, low bone mineral density, and increased fracture risk. In addition, treatments that those with TBDs may use can impact bone health and contribute to skeletal complications. This chat will be led by Dr. Kasiani Myers, MD, a member in the Division of Bone Marrow Transplantation and Immune Deficiency at Cincinnati Children’s and the Director of the Hematopoietic Stem Cell Transplant Late Effects and Survivorship Program. Dr. Myers has expertise in the TBD field and is working to understand the skeletal manifestations of TBDs. This chat offers an excellent opportunity to learn from an expert, ask questions, and connect with others.
Open Forum – Caregivers with Jena Robertson
December 9, 2025 at 7PM ET
Join us for our December Community Chat, hosted by community member Jena Robertson! This open forum is designed specifically for caregivers in the TBD community to connect, share experiences, and support one another. If you’re a caregiver looking to build community, we’d love to have you join. For community members who are not caregivers, we encourage you to explore our other community chat options!
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