iiinova — where your digital self keeps evolving

Team Telomere @teamtelomere.bsky.social · 02/10/2026

Please join us in congratulating Katie Stevens, now CEO | Strategic Partnerships at Team Telomere! Under her leadership, our patient-led community is helping shape TBD research and clinical trials from the ground up. Congratulations, Katie! #TelomereBiologyDisorders #RareDisease

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Team Telomere @teamtelomere.bsky.social · 25/09/2026

Shape the future of patient-centered TBD research! We are seeking 15 to 20 individuals with TBDs, caregivers, clinicians, researchers, genetic counselors, etc. to serve on our new Patient-Centered CER Steering Committee. Apply by September 30, 5:00PM ET: teamtelomere.submitt...

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Team Telomere @teamtelomere.bsky.social · 21/09/2026

On Sept. 1, NYC showed up for TBD research, raising $125,000 at #CocktailsAndChromosomes! From groundbreaking clinical trials to better diagnostics, this community is proving that rare doesn't mean forgotten. Thank you to everyone who made it possible. See you next year! 🥂

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Team Telomere @teamtelomere.bsky.social · 10/09/2026

Congrats to 2026 Nancy Cornelius Scholarship recipient Teagan Harris! Diagnosed with a TBD at 14, he earned his associate degree alongside his HS diploma and now studies Robotics Engineering at Miami University to make healthcare safer and more accessible. teamtelomere.org/res...

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Team Telomere @teamtelomere.bsky.social · 10/09/2026

Congrats to 2026 Nancy Cornelius Scholarship recipient Ali Hagrett! Inspired by her sister Cate's journey with a TBD, Ali organized stem cell drives and switched her major to Public Health Policy to give back to the rare disease community. Learn more: teamtelomere.org/res...

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Team Telomere @teamtelomere.bsky.social · 07/09/2026

This week, Team Telomere's Case Presentation Meeting brought together global experts to tackle hepatopulmonary syndrome in TBDs, a complication that's often missed. They explored screening, diagnosis, and transplant considerations. More: canva.link/3mj8hukrd...

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Team Telomere @teamtelomere.bsky.social · 03/09/2026

Join us Sept. 15 with Dr. Mary Beth Scholand, MD, founder of the University of Utah ILD Center, to talk clinical presentation, treatment, and transplant considerations. Bring your questions! 🫁 📅 September 15, 2026 | 7:00 PM ET Register: teamtelomere.org/res...

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Team Telomere @teamtelomere.bsky.social · 01/09/2026

Tonight's the night! Cocktails & Chromosomes: NYC is HERE! To everyone joining us tonight: thank you for showing up for this community, for this research, and for each other. #TeamTelomere #CocktailsAndChromosomes

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Team Telomere @teamtelomere.bsky.social · 31/08/2026

Tomorrow night, we raise a glass for a reason that matters. 🥂 Thank you to our incredible sponsors for making Cocktails & Chromosomes: NYC possible. See you at 200 Liberty St!

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Team Telomere @teamtelomere.bsky.social · 29/08/2026

3 days left! Cocktails & Chromosomes NYC is Sept 1, celebrating community, honoring progress, over cocktails and live music. Last chance → teamtelomere.org/coc... #TBD

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Team Telomere @teamtelomere.bsky.social · 24/08/2026

Living with a TBD as an adult comes with unique challenges, and sometimes you just need space to talk with people who get it. Adult Open Forum, no agenda, just community. 🩵 📅 September 1, 2026 | 7:00 PM ET Register: teamtelomere.org/res...

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Team Telomere @teamtelomere.bsky.social · 10/08/2026

Early bird pricing for Cocktails & Chromosomes: NYC ends tonight. Prices rise after midnight, so grab your seat now: teamtelomere.org/coc... #TeamTelomere #CocktailsandChromosomes

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Team Telomere @teamtelomere.bsky.social · 02/08/2026

One month from tonight, Team Telomere's community gathers in NYC for Cocktails & Chromosomes. Early-bird tickets end soon, register today! → teamtelomere.org/coc... #TBD

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Team Telomere @teamtelomere.bsky.social · 31/07/2026

The ADA turns 36 this year. For our Telomere Biology Disorders community, it's why doors to care, school, and daily life stay open. Protect it: swipe for 3 ways to act. #ADA36

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Team Telomere @teamtelomere.bsky.social · 30/07/2026

Raising a child with a TBD means navigating the unknown. Your family's real-world experience can help change that. Join our digital natural history study with @CitizenHealth in just 5 minutes. 👉 teamtelomere.org/cit...

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Team Telomere @teamtelomere.bsky.social · 27/07/2026

From comprehensive guidelines to quick-reference one-pagers, Team Telomere has resources for every step of the TBD journey. Whether newly diagnosed or a treating physician, these were made for you. 🔗 teamtelomere.org/one...

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Team Telomere @teamtelomere.bsky.social · 24/07/2026

One week left to apply for the Nancy Cornelius Scholarship Fund! 🩵 $1,000 for TBD patients, caregivers & family members pursuing college or trade school. The Deadline is August 1, 2026. teamtelomere.org/res...

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Team Telomere @teamtelomere.bsky.social · 22/07/2026

Sponsorship opportunities for Cocktails & Chromosomes NYC are open—support the science and the community behind it. Details → teamtelomere.org/coc... #TBD

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Team Telomere @teamtelomere.bsky.social · 21/07/2026

"We just need some extra help — and that's exactly what this scholarship did for me." 🩵 -Megan Colter, 2019 NCSF recipient. 2026 applications open through August 1. Learn more: teamtelomere.org/res...

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Team Telomere @teamtelomere.bsky.social · 13/07/2026

"This disease doesn't always have to hold us back — we just need some extra help." 🩵 Meet Megan Colter, our 2019 NCSF recipient. Applications for 2026 open through August 1. Read Megan's essay & apply: teamtelomere.org/res...

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Team Telomere @teamtelomere.bsky.social · 10/07/2026

Our One-Pager resources are now available in Italian, German, and Hebrew, joining English & Spanish! Accurate, accessible education for our global TBD community. Download yours: teamtelomere.org/one... #TeamTelomere #TelomereBiologyDisorders #RareDisease

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Team Telomere @teamtelomere.bsky.social · 09/07/2026

Patients, families, researchers, and clinicians unite this Sept 1 for Cocktails & Chromosomes NYC. Reserve your seat → teamtelomere.org/coc... #TBD

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Team Telomere @teamtelomere.bsky.social · 07/07/2026

Today's the day! ☀️ The 2026 Summit begins in Missoula — 4 days of research, connection & hope. So grateful for our partners & attendees. Let's make it count! #TeamTelomere

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Team Telomere @teamtelomere.bsky.social · 06/07/2026

Tomorrow the 2026 Summit begins! Huge thanks to our incredible sponsors & partners for making 4 days of rare disease science + community possible. 🩵 #TeamTelomere #Summit2026

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Team Telomere @teamtelomere.bsky.social · 05/07/2026

Patients shouldn't just be consulted—they should be heard. Kendall Davis, Patient-Focused Drug Development Consultant & Team Telomere Board Member, is chairing Session 7 at the 2026 Summit. 🙌 teamtelomere.network...

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Team Telomere @teamtelomere.bsky.social · 04/07/2026

In 2025, Team Telomere served 750+ patients and families, engaged 300+ clinicians, hosted 11 Community Chats, and surpassed $1.3M in total research funding — across 30+ countries. Partner with us to power what comes next. teamtelomere.org/ann...

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Team Telomere @teamtelomere.bsky.social · 03/07/2026

"Y'all Means All: Rural Advocacy and Rare Disease." Abbey Hauser is bringing health equity, storytelling & policy to Session 7 in Missoula. 🤠 teamtelomere.network... #TeamTelomere #RareDisease #HealthEquity #SpeakerSpotlight

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Team Telomere @teamtelomere.bsky.social · 03/07/2026

Grateful to welcome Cincinnati Children's Hospital Medical Center as a Summit Sponsor! 🩵 Home to Dr. Kasiani Myers, whose research on an active TBD gene therapy trial has achieved sustained telomere elongation in patients. teamtelomere.org/sci...

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Team Telomere @teamtelomere.bsky.social · 02/07/2026

Where has TBD research been—and where is it going? Dr. Suneet Agarwal (Harvard Medical School, Dana-Farber/Boston Children's, Harvard Stem Cell Institute) opens Day 1 of the Summit and chairs our Medical Advisory Board. teamtelomere.network... #TeamTelomere #TBD #SpeakerSpotlight

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Team Telomere @teamtelomere.bsky.social · 02/07/2026

"I have the power to defy what is thought to be my own limits." 🩵 Meet Ewan Laplante, our 2023 NCSF recipient. Applications for 2026 are open through August 1. Read Ewan's essay & apply: teamtelomere.org/res...

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Team Telomere @teamtelomere.bsky.social · 01/07/2026

Cocktails & Chromosomes NYC returns! Sept 1, 6–9PM, Hogan Lovells. Early bird tickets are $150, grab yours before prices rise → teamtelomere.org/coc... #TBD

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Team Telomere @teamtelomere.bsky.social · 01/07/2026

Proud to recognize the University of Utah as our 2026 Summit Scholarship Fund Sponsor! Home to a dedicated TBD Center, their support invests in the next generation of researchers & clinicians. 🩵 teamtelomere.org/sci...

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Team Telomere @teamtelomere.bsky.social · 30/06/2026

Before most clinicians knew what to do with a TBD diagnosis, Janet Talbert was already in the room. The first genetic counselor in the FPF space. 23 years in. Still building. 🌿 teamtelomere.network... #TeamTelomere #GeneticCounseling #PulmonaryFibrosis #TBD #SpeakerSpotlight

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Team Telomere @teamtelomere.bsky.social · 29/06/2026

TBDs touch nearly every organ system, and the 2026 TT Scientific & Community Summit reflects that. Seven sessions. Missoula, Montana. July 7–10. Clinicians, researchers, and advocates across disciplines, all in one room. Registration closes May 8: teamtelomere.org/sci...

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Team Telomere @teamtelomere.bsky.social · 28/06/2026

Rare disease care takes institutions willing to show up. 🩵 We're proud to welcome Cohen Children's Medical Center, Northwell Health as a Fly Reel Level Sponsor of the 2026 TT Summit — bringing pediatric expertise & deep commitment to Missoula this July. teamtelomere.org/sci...

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Team Telomere @teamtelomere.bsky.social · 27/06/2026

Laughing, thinking, and seeing things differently—that's how we're opening the Summit. 🎤 Michael Beers, comedian & disability advocate, headlines our July 7 keynote at the Historic Wilma Theatre. teamtelomere.network... #TeamTelomere #SpeakerSpotlight #Summit2026

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Team Telomere @teamtelomere.bsky.social · 26/06/2026

Grateful to have Texas Children's Hospital as a Fly Reel Sponsor of the 2026 Summit! Their dedicated Bone Marrow Failure Program works directly with patients navigating dyskeratosis congenita and related TBDs — and that expertise matters. Thank you! 🩵 teamtelomere.org/sci...

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Team Telomere @teamtelomere.bsky.social · 25/06/2026

Every good gathering needs someone who can hold space for real conversation. That's Hatton Littman—Gracious Space facilitator & Montana local. 🏔️ teamtelomere.network... #TeamTelomere #Summit2026 #SpeakerSpotlight

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Team Telomere @teamtelomere.bsky.social · 23/06/2026

Planning for a child with a rare disease is one of the hardest things a family faces. Mary McDirmid gets it, she lives it. ChSNC, ChFC, founder of All Needs Planning. Join us in Missoula this July. teamtelomere.network... #TeamTelomere #RareDisease #TBD #SpeakerSpotlight

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Team Telomere @teamtelomere.bsky.social · 22/06/2026

TBDs affect many organs over a lifetime, but care is often fragmented. Our partnership with @CitizenHealth brings those experiences together, building a clearer picture of life with TBD. Just 5 minutes. Real impact.👉 teamtelomere.org/cit...

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Team Telomere @teamtelomere.bsky.social · 21/06/2026

Foundational is not an overstatement. Dr. Sharon Savage (NCI) helped start this community in 2008—and she'll be with us in Missoula this July to continue the work. 💙 teamtelomere.network... #TeamTelomere #TBD #DyskeratosisCongenita #SpeakerSpotlight #RareDisease

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Team Telomere @teamtelomere.bsky.social · 21/06/2026

Happy Father's Day to every dad in the Team Telomere community. 🩵 Whether you are caring for a child with a TBD, navigating your own diagnosis, or carrying the weight of loss, we are grateful you are part of this community.

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Team Telomere @teamtelomere.bsky.social · 20/06/2026

Honored to recognize the Agarwal Lab at Boston Children's as a Summit Sponsor! 🩵 Dr. Suneet Agarwal has spent 15+ years advancing TBD research and clinical care. teamtelomere.org/sci...

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Team Telomere @teamtelomere.bsky.social · 19/06/2026

The science of TBD doesn't stop at biology. 🧬 Dr. Catherine Wilsnack brings a psychosocial lens to TBD—whole-person support for patients & families. Joining us at the 2026 Summit. Learn more: teamtelomere.network... #TeamTelomere #TBD #SpeakerSpotlight #RareDisease #Summit2026

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Team Telomere @teamtelomere.bsky.social · 19/06/2026

Happy Juneteenth! Today we honor emancipation and recommit to the work still ahead. In rare disease, equity is not optional, it means ensuring research, care, and community reach everyone, especially those historically left out.

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Team Telomere @teamtelomere.bsky.social · 18/06/2026

"With proper effort, one can be successful in life." 🩵 Meet Andrew Aguilar, our 2025 NCSF recipient. Applications for 2026 are open through August 1. Read Andrew's essay & apply: teamtelomere.org/res...

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Team Telomere @teamtelomere.bsky.social · 18/06/2026

We're honored to recognize the Carson Family as a Compass Level Sponsor of our 2026 Scientific & Community Summit! Their support makes four days of science, community & discovery possible this July. Thank you for helping guide this work forward. 🧭🩵 teamtelomere.org/sci...

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Team Telomere @teamtelomere.bsky.social · 17/06/2026

72 riders. $10,840 raised. So much more than miles. Thank you to every rider, donor, volunteer & speaker who made Chainrings & Chromosomes unforgettable. The work isn't done — donate now 👇 teamtelomere.network...

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Team Telomere @teamtelomere.bsky.social · 16/06/2026

Some of the most meaningful moments happen when community gathers. 🩵 We're honored to recognize the Cornelius Family as sponsor of Summit Night at the Wilma — creating space to connect, celebrate & remember why this work matters. Thank you! teamtelomere.org/sci...

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Team Telomere @teamtelomere.bsky.social · 16/06/2026

This was Team Telomere's final year in the Million Dollar Bike Ride, and we're making it count. 🚴🩵 We're riding toward $40K for TBD research and already almost there! Every fundraiser, gift, and share helps. Join us: teamtelomere.network...

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