Team Telomere

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

สวัสดี! Thailand now has a voice in Team Telomere’s Global Ambassador network!Please welcome Dr. Pongtawat Lertwilaiwitt...
10/21/2026

สวัสดี! Thailand now has a voice in Team Telomere’s Global Ambassador network!

Please welcome Dr. Pongtawat Lertwilaiwittaya, MD, FACMG, our newest Global Ambassador for Thailand! Dr. Lertwilaiwittaya earned his MD from the Faculty of Medicine Siriraj Hospital, Mahidol University, and completed combined training in internal medicine and medical genetics and genomics at the University of Alabama at Birmingham, where he now practices as a clinical geneticist and internist.

He leads the Telomere Clinic and is building the Telomere Registry at UAB and Children’s of Alabama, work that helps families find answers and moves TBD research forward. His focus areas include genetic testing for TBD screening, long-read sequencing, and transplant genetics.

We’re honored to have him carrying the TBD community’s voice across borders. Join us in giving Dr. Lertwilaiwittaya a warm Team Telomere welcome! 💙



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สวัสดี! ตอนนี้ประเทศไทยมีตัวแทนในเครือข่าย Global Ambassador ของ Team Telomere แล้ว!

ขอต้อนรับ นพ. พงศ์ธวัช เลิศวิลัยวิทยา (MD, FACMG) Global Ambassador คนใหม่ของเราประจำประเทศไทย! คุณหมอพงศ์ธวัชสำเร็จการศึกษาแพทยศาสตรบัณฑิตจากคณะแพทยศาสตร์ศิริราชพยาบาล มหาวิทยาลัยมหิดล และสำเร็จการฝึกอบรมแพทย์ประจำบ้านสาขาอายุรศาสตร์และเวชพันธุศาสตร์และจีโนมิกส์ (Medical Genetics and Genomics) จาก University of Alabama at Birmingham (UAB) ปัจจุบันท่านปฏิบัติงานเป็นแพทย์เวชพันธุศาสตร์และอายุรแพทย์อยู่ที่นั่น

คุณหมอพงศ์ธวัชเป็นผู้ก่อตั้ง Telomere Clinic และทะเบียนผู้ป่วยโรคเทโลเมียร์ (Telomere Registry) ที่ UAB และ Children’s of Alabama งานนี้ช่วยให้ครอบครัวต่างๆ ได้รับคำตอบ และช่วยขับเคลื่อนงานวิจัยกลุ่มโรคความผิดปกติของเทโลเมียร์ (Telomere Biology Disorders: TBD) ให้ก้าวหน้า ความเชี่ยวชาญของท่านครอบคลุมการตรวจทางพันธุกรรมเพื่อคัดกรองโรค TBD และเวชพันธุศาสตร์ที่เกี่ยวข้องกับการปลูกถ่ายอวัยวะ

เรารู้สึกเป็นเกียรติอย่างยิ่งที่ท่านจะเป็นกระบอกเสียงให้กับชุมชน TBD ข้ามพรมแดน มาร่วมต้อนรับคุณหมอพงศ์ธวัชสู่ Team Telomere อย่างอบอุ่นกัน! 💙

Citizen Health Week is wrapping up. The opportunity to take part is still open - but our first phase closes October 31.T...
10/19/2026

Citizen Health Week is wrapping up. The opportunity to take part is still open - but our first phase closes October 31.

This week, we showed how your medical records can work for you and our community: supporting everyday advocacy, turning scattered information into research data, and helping us study transplant outcomes and pulmonary complications across patients and centers.

Now, we need your participation to build on that work.

If you’ve been meaning to enroll, join today. If you’ve already joined, thank you - and please share this opportunity with another person or family impacted by a TBD.

Every participant brings an experience that can help strengthen our understanding and inform what comes next.

Your Story. Your Data. Our Power.

Enroll today and choose to contribute your de-identified data for research. Our first phase closes October 31: https://teamtelomere.org/citizen-health/

First recognized through changes to the skin, nails, and mouth, dyskeratosis congenita later became linked to bone marro...
10/18/2026

First recognized through changes to the skin, nails, and mouth, dyskeratosis congenita later became linked to bone marrow failure. Today, we know the broader spectrum of Telomere Biology Disorders includes serious lung complications, including pulmonary fibrosis.

We need to better understand how these complications develop, progress, and respond to care.

Through Citizen Health, we have identified specific data points to extract from medical records to study pulmonary involvement in our community. Bringing records together across patients and institutions can help build a clearer picture and inform the next steps in research.

If you or your loved one has a TBD and pulmonary fibrosis or other lung complications, we want you to sign up. Your experience can help move this work forward.

Join Citizen Health today and choose to share your de-identified data for research. Our first phase closes October 31.

Enroll now: https://teamtelomere.org/citizen-health/

“What medications have we already tried?”“When did that symptom start?”“Wait - what did they say the next step was?”Mana...
10/17/2026

“What medications have we already tried?”
“When did that symptom start?”
“Wait - what did they say the next step was?”

Managing a TBD means keeping track of a lot. Citizen Health’s AI Advocate can help you find and use the information in your records throughout that process.

Before a visit: Prepare a medical history summary, review diagnoses and treatments, and organize questions.

During and after a visit: Capture notes, summarize what was discussed, and keep next steps together.

Beyond the clinic: Use your records to support school plans and IEPs, insurance appeals, disability documentation, second opinions, and care coordination.

Your medical history can be a tool for everyday advocacy - and, when you choose to share de-identified data, a contribution to our community’s research.

Join Citizen Health today. Our first phase closes October 31. Visit our page to enroll and learn about accessing AI Advocate. https://teamtelomere.org/citizen-health/

To improve stem cell (bone marrow) transplant outcomes in TBDs, we need to learn across patients - and across centers.We...
10/16/2026

To improve stem cell (bone marrow) transplant outcomes in TBDs, we need to learn across patients - and across centers.

We need to understand which approaches were used, what complications occurred, and how patients did over time. Comparing those experiences can help researchers understand what is working, where challenges remain, and what to study next.

The strength of Citizen Health is that this picture can extend beyond a single institution. Records from your transplant center and other providers can be brought together to help tell a more complete story.

Along with our researchers, Team Telomere is planning a focused analysis of BMT experiences and outcomes. If you or your child has undergone a stem cell transplant for a TBD, we encourage you to enroll.

We are particularly interested in radiation- and alkylator-free approaches using alemtuzumab (Campath) and fludarabine. Your transplant records may also mention mycophenolate mofetil (CellCept), cyclosporine, or tacrolimus for graft-versus-host disease prevention. You do not need to remember every medication to join - your records can help provide those details.

Your experience can help inform the next steps toward better transplant outcomes. Join Citizen Health today and choose to share your de-identified data for research. Our first phase closes October 31.

Enroll now: https://teamtelomere.org/citizen-health/

Join us for our next Community Chat! 💉Vaccines and immune considerations are important topics for individuals and famili...
10/15/2026

Join us for our next Community Chat! 💉

Vaccines and immune considerations are important topics for individuals and families navigating Telomere Biology Disorders, and this session is designed to help you get the information you need.

On October 27, we're joined by Dr. Suneet Agarwal, MD, PhD, Chair of Team Telomere's Medical Advisory Board and physician-scientist at Dana-Farber/Boston Children's Cancer and Blood Disorders Center, alongside Katie Stevens, Team Telomere’s CEO, bringing advocacy perspective to the conversation. Together, they'll offer evidence-based guidance and open the floor for your questions.

📅 Tuesday, October 27, 2026 | 7:00 PM ET Register now: https://teamtelomere.org/resources/community-chats/

Citizen Health turns medical records into knowledge that can power TBD research.By organizing results, diagnoses, treatm...
10/15/2026

Citizen Health turns medical records into knowledge that can power TBD research.

By organizing results, diagnoses, treatments, and major events into structured data, Citizen Health helps researchers study patterns across people and over time.

Take a telomere length result: it may be buried in one of many PDFs. Citizen Health can turn that report into clearly organized information - the cell type, measurement, percentile, and date - that researchers can use alongside results from other participants.

Our community is already creating a clearer picture. The early Team Telomere proof-of-concept dataset included 49 participants and multiple TBD genes, showing the genetic complexity of our community.

Building on this work can help researchers understand differences in disease presentation, identify unmet needs, follow outcomes, and prepare for future studies and trials.

Your records can help strengthen that picture. Join Citizen Health today and choose to contribute your de-identified data for research. Our first phase closes October 31.

Enroll now: https://teamtelomere.org/citizen-health/

The first person your medical data should help is you.You’ve lived the appointments, tests, treatments, and search for a...
10/14/2026

The first person your medical data should help is you.

You’ve lived the appointments, tests, treatments, and search for answers. Having that history organized can help you prepare for your next visit, explain your experience to a new specialist, and advocate for yourself or your loved one.

Your data should work for you. It should also work for the community.

When you choose to share de-identified data for research, your records can help answer bigger questions: What symptoms appeared first? How long did the diagnosis take? Which treatments were tried? Where do gaps in care keep showing up?

That is the power of Team Telomere’s partnership with Citizen Health: information you can use today, and knowledge our community can build on.

Put your data to work. Join today - our first phase closes October 31. https://teamtelomere.org/citizen-health/

10/13/2026

Your medical records could help shape the next TBD treatment.

We’re kicking off Citizen Health Week at Team Telomere with our CEO, Katie Stevens, coming to you from Harvard Medical School, where she joined conversations about potential TBD therapies. Those treatments need to be grounded in how TBDs show up in real lives, and that’s what our natural history study with Citizen Health is building.

Joining is simple! You'll need a U.S. government-issued ID, like a driver's license, and a list of the clinics, hospitals, and doctors you or your loved one have seen. Citizen Health gathers those records, de-identifies them, and brings them together into a dataset researchers can use to better understand this complex disorder.

We're looking for 10 to 15 more patients to complete our first dataset before enrollment closes October 31st.

To join visit: https://teamtelomere.org/citizen-health/

If you have any questions email: [email protected]

Today, Team Telomere and the Insley family are honored to launch the Thomas W. Insley Fund, Team Telomere’s first endowm...
10/12/2026

Today, Team Telomere and the Insley family are honored to launch the Thomas W. Insley Fund, Team Telomere’s first endowment, honoring Tom’s life and legacy on the fourth anniversary of his passing.

Tom was someone who never stopped learning. Whether he was reading a book, following a game, trying a new recipe, or talking with family and friends, he was genuinely interested in the world around him. He approached life with curiosity, generosity, and a desire to make a meaningful difference.

Created in Tom’s memory, the fund will support both critical research and the work of Team Telomere, helping patients, caregivers, clinicians, and researchers affected by telomere biology disorders.

While Tom is no longer with us, his legacy lives on through the people he loved and the lives he touched. We believe he would be proud to know that this fund will help advance research and provide support for families affected by Telomere Biology Disorders, bringing hope to patients today and to the generations that follow.

If Tom touched your life, or if you believe in the mission of Team Telomere, we invite you to join us in honoring his memory through a contribution to the fund.

Together, we can create hope, accelerate research, and help build a better future for families affected by telomere biology disorders.

❤️ Give to the Thomas W. Insley Fund and help advance research and care for those impacted by TBDs: https://teamtelomere.org/thomas-w-insley-fund/

Susan Brasse Insley

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Coeur D'alene, ID

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