Team Telomere

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

07/28/2026

Camp Sunshine applications are opening soon! Sixteen years of bringing Team Telomere families to the banks of Lake Sebago, sixteen years of building a community that just gets it. ☀️💙

For over a decade and a half, Camp Sunshine at Sebago Lake has given TBD families a place to just be together: free, medically supportive, and built around what our community actually needs. Kids get to be kids, while parents get real talk and real answers from leading TBD researchers. And everyone gets to reconnect, recharge, and be reminded that no one faces this journey alone.

16 years strong. Let's make this one unforgettable.

Learn more about Camp Sunshine and apply here: https://teamtelomere.org/resources/camp-sunshine/

07/27/2026

Knowledge is power, especially when navigating a rare disease diagnosis.

Team Telomere has two essential resources to help patients, families, clinicians, and researchers better understand Telomere Biology Disorders.

Our Diagnosis & Management Guidelines is a comprehensive reference manual covering major body systems, clinical management, ongoing research, and future treatment options. Built through international collaboration between clinicians and scientists, it was made for patients, physicians, and researchers alike.

Need key information fast? Our One-Pager Resources report the most important insights from the Guidelines into concise, accessible overviews covering diagnostics, clinical manifestations, and management.

Whether you're newly diagnosed, supporting a loved one, or a medical professional seeking guidance, these resources were made for you.

🔗 Access the Diagnosis & Management Guidelines: https://teamtelomere.org/diagnosis-management-guidelines/
🔗 Explore One-Pager Resources: https://teamtelomere.org/one-pager-resources/

07/24/2026

One week left to apply for the Nancy Cornelius Scholarship Fund!

If you or someone you know in the TBD community is pursuing a college education or trade school, don't let this opportunity pass. This $1,000 scholarship is available to patients, caregivers, and family members, with no minimum credit requirement.

To apply, submit a 500-word essay on how the scholarship will impact you, along with a Diagnosis Verification Form. Applications close August 1, 2026!

Submit your application before time runs out: https://teamtelomere.org/resources/nancy-cornelius-scholarship-fund/

07/22/2026

Want to bring your team to an incredibly meaningful evening in the rare disease community, and support the science making it possible? Sponsorship opportunities for Cocktails & Chromosomes: NYC are still available!

On September 1st, patients, families, advocates, clinicians, researchers, and partners will gather at Hogan Lovells, 390 Madison Ave in New York City for an elegant evening celebrating the Telomere Biology Disorder community, and sponsors get to be right in the middle of it.

Every sponsorship tier includes complimentary tickets for your team:
→ Catalyst Tier: 20 tickets
→ Helix Tier: 15 tickets
→ Luminary Tier: 12 tickets
→ Spotlight Tier: 8 tickets
→ Gilded Tier: 4 tickets

Beyond the evening itself, your sponsorship directly funds Team Telomere's mission: the research, patient programs, and advocacy work that is actively changing outcomes for people living with Telomere Biology Disorders. This is a chance to align your organization with a community that is moving science forward, and to celebrate that progress in person.

Download our full sponsorship packet or reach out to our team to find the right fit for your organization: teamtelomere.org/cocktails-chromosomes-nyc-2026/

07/21/2026

Determination looks like this. 🩵

Jonathon Hornback, our 2024 Nancy Cornelius Scholarship Fund recipient, put it simply: "My journey has been anything but ordinary… Despite the challenges I face, I am determined to succeed and make a positive impact in this field."

Living with a Telomere Biology Disorder while pursuing an education is no small thing. The Nancy Cornelius Scholarship Fund exists to make that path a little more possible, $1,000 awarded each year to a patient, caregiver, or family member in the TBD community who is pursuing college or trade school.

Applications for 2026 close August 1st. If Jonathon's words resonate with you, this scholarship might be exactly what you've been looking for.

Read previous winner essays, and submit your own at: https://teamtelomere.org/resources/nancy-cornelius-scholarship-fund/

07/14/2026

A new partnership just opened the door to faster treatment options for rare diseases, and it could be big for the TBD community.

Biohub (a Chan Zuckerberg Initiative) just announced the expansion of its Rare As One program, including a powerful new partnership with Every Cure, the nonprofit co-founded by Dr. David Fajgenbaum.

Together, they're connecting patient organizations with drug-repurposing opportunities: using existing, approved medicines in new ways to treat diseases with few or no treatment options. Drug repurposing could be a game-changer for TBDs, potentially bringing new treatment options to patients faster and more affordably than traditional drug development ever could.

Read the full blog post to learn more about what this partnership could mean for our community: https://biohub.org/blog/ai-powered-biology-rare-disease/

07/13/2026

"This disease doesn't always have to hold us back – we just need some extra help. That is exactly what the scholarship has done for me." 🩵

That's Megan Colter, our 2019 Nancy Cornelius Scholarship Fund recipient, and she said it better than we ever could.

Nancy Cornelius believed that every person in the TBD community deserved support, resources, and the chance to keep moving forward. This scholarship is one of the ways we honor that belief. Every year, we award $1,000 to a community member, patient, caregiver, or family member pursuing college or trade school.

2026 applications are open through August 1st. Could that be you or someone you know?

Learn more and apply at: https://teamtelomere.org/resources/nancy-cornelius-scholarship-fund/

07/10/2026

Our One-Pager Resources are now available in even more languages!

Originally available in English, and expanded to Spanish in 2025, our One-Pager educational resources are now also available in Italian, German, and Hebrew.

Ora disponibile in italiano.
Jetzt auf Deutsch verfügbar.
זמינים עכשיו בעברית.
These resources highlight key insights from our guidelines, offering a concise overview of diagnostics, clinical manifestations, and management for Telomere Biology Disorders. They are designed to serve as an accessible reference point for patients, families, clinicians, advocates, and members of our global community.

We are deeply grateful to Dr. Luca Arcuri (Italian), Dr. Fabian Beier (German), and Noa Hourvitz and Dr. Daphna Marom (Hebrew) for generously lending their time, language expertise, and medical insight to help ensure these translations are accurate, thoughtful, and accessible to our global community.

Our One-Pagers are always available to access and download on our website. Visit the link in our bio to download yours today!

07/09/2026

Cocktails & Chromosomes: NYC isn't just a celebration, it's a demonstration of what's possible when patients, families, researchers, and clinicians stand together.

This September 1st, we'll gather at Hogan Lovells in Midtown Manhattan, NYC to share real progress: updates on the clinical trial that our community helped make possible, and a look at where the Telomere Biology Disorder field is headed. Team Telomere’s work doesn't happen without nights like this, and nights like this don't happen without people like you.

Join us! September 1 | 6–9 PM ET | 390 Madison Ave, New York, NY

Tickets are available now, secure your seat at: teamtelomere.org/cocktails-chromosomes-nyc-2026/

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http://www.teamtelomere.org/

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