Team Telomere

Supporting families worldwide affected by Dyskeratosis Congenita and Telomere Biology Disorders.

10/30/2026

What matters most to our community should help guide what comes next in TBD research. An exciting new award will help us put that vision into action!

Team Telomere has been awarded a $300,000 Eugene Washington PCORI® Engagement Award from the Patient-Centered Outcomes Research Institute® (PCORI®).

This two-year project will help our community build the knowledge, skills, and partnerships needed to shape future research in Telomere Biology Disorders (TBDs).

Through educational workshops, practical tools, and ongoing opportunities for collaboration, individuals impacted by TBDs, caregivers, clinicians, and researchers will learn and work together, helping ensure that future research addresses the questions and outcomes that matter most to people impacted by TBDs.

This is an exciting milestone for our entire community! Your experiences and perspectives are at the heart of everything we do - and together, we’re advancing research and care for all those impacted by TBDs.

Learn more about the project: https://teamtelomere.org/building-capacity-for-patient-centered-research-in-telomere-biology-disorders/

10/30/2026

Final call! Enroll in Citizen Health by October 31 to be part of our first community analysis!

Getting started may be easier than you think. Megan Eyles-Stephens, Team Telomere’s Program Administrator and mom to Gabby, walks through signing up and uploading medical records from New Zealand - all in about two minutes!

Wherever you are in the world, joining is simple, and the information you share can help advance TBD research.

Your records can help researchers study diagnostic journeys, transplant approaches, complications, and outcomes - and identify questions for future research.

Want to learn more? Visit our Citizen Health webpage for Jena Robertson’s walkthroughs of requesting medical records and using Ari, the AI Advocate. You can also find our community webinar recap in the Research Corner.

Enroll by October 31! https://teamtelomere.org/citizen-health/

10/29/2026

Team Telomere is thrilled to welcome Amy Raymond, PhD, PMP, to our Board of Directors! 🎉

Amy brings more than 20 years of experience in drug discovery and clinical development, with a focus on building collaborative programs that reflect the needs of families, clinicians, and everyone working toward better care. She currently serves as Vice President of Therapeutic Strategy at Worldwide Clinical Trials.

Her work is all about turning scientific innovation into real treatments for people with rare and complex diseases. We can’t wait to see what she brings to the TBD community.
Please join us in welcoming Amy! 💙

10/29/2026

A Turkey Trot is even better when it gives back. 🦃🏃🩵

Team Telomere's Turkey Trot fundraiser is officially open! Anytime between November 21 and 29, choose a community race, run your favorite neighborhood route, or turn a walk into your own personal trot, and share your fundraising link! We'll provide templates to make asking friends and family easy.

🎁 Sign up and receive a gift, raise $250 and we will cover your race fee up to $75! Register by November 9 to guarantee your gift arrives!
🎯 Help us reach our $5,000 goal!

👉 Sign up here: https://teamtelomere.networkforgood.com/projects/308258-turkey-trot-for-team-telomere-2026

10/29/2026

Enroll in Citizen Health by October 31 to be part of our first data analysis!

Katie Barrett Stevens shares why this matters now. We especially encourage you to join if you or your loved one has:
• A variant of uncertain significance (VUS)
• A history of stem cell (bone marrow) transplant
• Pulmonary fibrosis or other lung complications

More than 15 people have already signed up for Citizen Health this month - add your experience!

Your records can help researchers study diagnostic journeys, transplant approaches, complications, and outcomes - and identify questions for future research.

Enroll by October 31 to be part of our first analysis! https://teamtelomere.org/citizen-health/

Citizen Health

10/28/2026

Our community is at the heart of everything we do, and your support helps make this work possible.

When you give to Team Telomere, you help those directly impacted by TBDs access trusted information and connection. You strengthen education and advocacy for better recognition and diagnosis of Telomere Biology Disorders. You help advance research into causes, effective treatments, and a path toward a cure.

There are many ways to support this mission. Up until Giving Tuesday, we’ll share giving opportunities that reflect the different ways our community can come together to make a difference.

Find the giving option that works for you: https://teamtelomere.org/ways-to-give/

10/26/2026

Tomorrow night is Team Telomere’s Community Chat on vaccines and immune considerations! 💉

If you've had questions about vaccines while navigating a Telomere Biology Disorder, this is your chance to get answers. Dr. Suneet Agarwal, MD, PhD, Chair of our Medical Advisory Board and physician-scientist at Dana-Farber/Boston Children's Cancer and Blood Disorders Center, joins CEO Katie Stevens for evidence-based guidance and live Q&A.

📅 October 27, 2026 | 7:00 PM ET
There's still time to register!: https://teamtelomere.org/resources/community-chats/

Can't attend? Register, and then email [email protected] to request a recording!

10/24/2026

Researchers are gathering in Memphis this weekend to talk about the future of bone marrow failure research, and our community is at the table.

Our CEO, Katie Stevens, will be speaking at the NAPAAC Scientific Symposium, "Bone Marrow Failure and Myelodysplastic Syndromes: From Discoveries to Future Strategies," hosted by St. Jude Children's Research Hospital and the North American Pediatric Aplastic Anemia Consortium, October 25 to 27.

The organizers want to hear more from patients and families, and that's exactly what the TBD community brings. Your lived experience shapes better research. Virtual participation is available for select sessions, so you can join from home.

Learn more and register at: https://www.stjude.org/education-training/professional-development/seminars-symposia/napaac.html

10/23/2026

Join us for our next Community Chat, created especially for families in Australia and New Zealand! 🧬

How are Telomere Biology Disorders diagnosed and monitored, and what treatment options are on the horizon? Team Telomere and Maddie's Vision are teaming up to bring you answers from leading experts.

Associate Professor Lucy Fox, Hematologist at Peter MacCallum Cancer Centre and the Royal Melbourne Hospital, and Dr. Pasquale Barbaro, Pediatric Hematologist at Queensland Children's Hospital, will cover the role of laboratory testing, current treatments, and emerging approaches. Professor Tracy Bryan, Head of the Cell Biology Unit at Children's Medical Research Institute, will chair the session.

📅 Tuesday, November 24, 2026 | 7:00 PM AEDT | 9:00 PM NZDT | Virtual via Zoom
Register now: https://teamtelomere.dm.networkforgood.com/forms/australia-x-new-zealand-community-chat-register-your-interest

Can't attend? Register, and then email [email protected] to request a recording!

10/23/2026

Help shape the next edition of the Telomere Biology Disorder Guidelines!

Team Telomere is preparing the 3rd Edition of its Telomere Biology Disorder: Diagnosis and Management Guidelines, and we want our community’s experiences and questions to help guide this work.

If you are living with a TBD, a caregiver, a family member, or a bereaved loved one, we invite you to share:
💬 Topics or questions you would like the guidelines to address
💬 What was helpful - or could be improved - from the previous edition
💬 Ideas for making the information clearer and more useful

Your perspective can help strengthen this resource for our community!

Share your feedback today: https://forms.gle/AMVEccVcsroue3kj9

Address

Coeur D'alene, ID

Website

http://www.teamtelomere.org/

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