Team Telomere, Coeur d'Alene, ID (2026)

06/05/2026

Katie is at it again - and this time, she is taking on one of Missoula’s toughest trail races for Telomere Biology Disorder (TBD) research and the TBD community.

On Sunday, June 7, Katie will run the Pengelly Double Dip, a challenging half marathon+ course with 3,200 feet of elevation gain X2! This is not your average race - it is steep, intense, and capped at just 150 participants!

This will be Katie’s THIRD race dedicated to raising awareness and support for TBD research and the families who make up this community - and as the saying goes “third time’s the charm”! Every mile, every climb, and every step is rooted in the same goal: moving research, care, and hope forward for those impacted by TBDs.

To honor the 7,400 feet of elevation Katie is taking on, we invite you to donate $32 for 3,200 feet (TWICE).

Your gift helps support Team Telomere’s work to advance research, education, and connection for the TBD community.

This research season, climb for a cure alongside Katie and donate $32 for 3,200 feet: https://teamtelomere.networkforgood.com/projects/294404-katie-runs-for-rare-rural

06/05/2026

Join us for our next Community Chat with Maggie Rowe, Team Telomere’s Education Liaison!

For those with Telomere Biology Disorders (TBDs), the educational environment can bring unique considerations. Individuals and families often look for support in navigating school participation, physical limitations, treatments, accommodations, and other factors that can impact learning and daily school life.

In this community chat, Maggie will share practical guidance on IEP planning and educational advocacy. She is a Clinical Social Worker and Child Life Specialist in Spokane, WA, and has served as a hospital-school liaison, bringing valuable expertise in supporting children with chronic medical concerns in educational settings.

This session will offer a supportive space to learn more about 504 plans, Individualized Education Programs (IEPs), and how education advocates can help families understand their options and work with schools.

Register now! Tuesday, June 9, 2026 at 7:00 PM ET
https://teamtelomere.org/resources/community-chats/

06/04/2026

For Christina, the Million Dollar Bike Ride is more than a fundraiser. It's hope in motion. 💙

Christina is one of our Million Dollar Bike Ride fundraisers who lives with a Telomere Biology Disorder diagnosis. She knows firsthand what it means to face a condition with no cure and no intervention, only monitoring and waiting.

In her own words:
"I genuinely don't think anyone actually realizes the impact of living with a rare condition that has no cure, no intervention — just monitoring and waiting for things to take a turn. Not an easy weight to carry around daily."

This year, Christina rides in memory of her Mammy and Dominic, two people she holds close every single day. Their memory gives her hope, and that hope is what drives her forward.

Every donation funds the research that could one day change what this diagnosis means for Christina and everyone living with a Telomere Biology Disorder.

💙 Donate to Christina's fundraiser, join another team, or start your own page: https://teamtelomere.networkforgood.com/projects/301267-coffey-ryan-christina-s-fundraiser

Ready, Set, Pedal for Research. 🚴

06/04/2026

Meet Cash Lindsley, our Digital Impact Manager at Team Telomere! 💙

Cash is a junior in high school and a Project Lead Volunteer whose passion for community impact brought him to Team Telomere through his father, Dr. Coleman Lindsley of Dana-Farber Cancer Institute. Cash shows up with purpose and that dedication that speaks volumes.

As Digital Impact Manager, Cash keeps our digital presence running and ensures that critical clinical guidelines reach everyone who needs them. You'll also find him at Team Telomere Community and Scientific Summits, rolling up his sleeves wherever help is needed most.

Outside of TT, Cash is a proud Philadelphia sports fan, a runner, and a talented pianist!

We are so grateful to have Cash on the team. Thank you for your time, your talent, and your heart for this community, Cash! 🌟

06/01/2026

Join us tomorrow for our June Community Chat with Kayla Hamilton, MS, CGC!

Telomere Biology Disorders (TBDs) can have implications beyond a diagnosed individual, such as raising questions for family members about genetics, inherited risk, and testing. Understanding what genetic information may mean for relatives - and how to navigate those conversations - can feel challenging.

In this community chat, Kayla Hamilton, a genetic counselor with expertise in TBDs, will discuss how genetic counseling can help individuals and families understand testing options, interpret results, and explore the implications of genetic information. She will also share guidance on how families can approach questions related to genetic testing and risk.

The session will offer a supportive space for questions. Team Telomere staff will be present to facilitate the conversation.

Register now! Tuesday, June 2, 2026 at 7:00 PM ET
https://teamtelomere.org/resources/community-chats/

06/01/2026

Happy Pride Month from Team Telomere!

We celebrate the strength and resilience of the LGBTQIA+ community, not just this month, but every day as we work toward a future where everyone impacted by Telomere Biology Disorders is seen, heard, and cared for.

The intersection of rare disease and LGBTQIA+ healthcare is real and consequential. Systemic inequities, unconscious bias, and a lack of affirming care can delay diagnosis and block access to treatment, especially in conditions like TBDs, where early intervention is critical. We are committed to navigating these barriers alongside our community.

We also honor the legacy of LGBTQIA+ activists who transformed rare disease advocacy. The fight for HIV/AIDS treatment access in the 1980s and '90s reshaped how patients engage with the FDA, directly contributing to the first Prescription Drug User Fee Act (PDUFA) in 1992, which changed how rare disease therapies are developed and approved, and gave patients a lasting voice in that process. (Source: RDLA Rare Diversity Hub)

This Pride Month, we recommit to:
- Encouraging inclusive, groundbreaking research
- Educating providers on affirming, rare disease-aware care
- Advocating for policies that advance health equity for all

You belong here. Your identity matters. Your health matters. And we're with you every step of the way.

05/29/2026

At the end of last month, Team Telomere hosted a Multidisciplinary Case Presentation Meeting bringing together their Centers of Excellence and physicians from 19 international institutions, all focused on one of the most challenging areas in rare disease genetics: variant interpretation in Telomere Biology Disorders (TBDs).

The meeting centered on Variants of Uncertain Significance (VUS), which are variants for which there is not enough evidence to say whether the variants are disease-causing (pathogenic) or not (benign). These VUS leave patients and families in diagnostic limbo when clinical features point toward a TBD but genetic evidence remains inconclusive, and can cause unnecessary changes in disease management when over-interpreted. The discussion tackled critical questions:

🔬 How do we distinguish a disease-causing variant from an incidental rare finding?
🧪 What functional assays are needed to support classification?
🗣️ How do clinicians communicate uncertainty without overstating its significance?

Three clear takeaways emerged:
✅ Functional assays are essential for variant classification
✅ Clinicians must resist over-interpreting a VUS as a definitive diagnosis
✅ Open, honest communication with patients and families is non-negotiable

This kind of collaborative, international work is exactly how rare disease science moves forward, one careful case at a time.

Learn more online on our research corner: https://teamtelomere.org/research-corner/

05/26/2026

A new article in Seminars in Hematology, titled “Telomere biology disorders as an example of rare disease advocacy”, highlights how advocacy has helped shape progress in the Telomere Biology Disorder field. The article was co-authored by Team Telomere’s Katie Stevens and Hannah Raj alongside DC Action.

The article describes how advocacy has helped move the TBD field forward in several important ways, including:
🧬 Increasing awareness of when to consider a TBD diagnosis
🧬 Supporting access to appropriate telomere length testing and genetic testing
🧬 Helping develop and share clinical management guidelines
🧬 Building educational resources for patients, families, and clinicians
🧬 Strengthening multidisciplinary care models, including Centers of Excellence
🧬 Supporting programs that connect community and provide support
🧬 Funding and facilitating research, registries, convenings, and collaboration
🧬 Highlighting the need for equity in diagnosis, care, and research participation

One of the article’s central messages is that advocacy is not “extra” or separate from medical and scientific progress. In rare diseases like TBDs, advocacy often provides the structure that makes progress possible. It helps connect people, identify unmet needs, bring specialists together, support research participation, and ensure that patient and family experiences remain central to the work.

For the TBD community, this article is also a reflection of collective effort. Every family story shared, every question raised, every research participation decision, every care experience, and every act of community connection helps shape the future of this field.

As more individuals are diagnosed and new research and therapeutic possibilities emerge, the role of advocacy will remain essential. Team Telomere is committed to continuing this work alongside the community, clinicians, researchers, and partners around the world.

Read the full article: https://authors.elsevier.com/a/1n7Tz8THnp5QS

05/25/2026

Please join us in welcoming Megan Stephens as Team Telomere’s now full-time Program Administrator!

Megan first connected with Team Telomere in 2015, when her four-year-old daughter, Gabby, was diagnosed with a Telomere Biology Disorder, Dyskeratosis Congenita. Since then, Megan has been a dedicated advocate for Gabby and a deeply valued member of the Team Telomere community.

After attending Camp Sunshine in 2016 and 2018, Megan and her family felt a lasting connection to this community, inspiring her to give back in meaningful ways. She has served as Team Telomere’s Pacific Ambassador and, more recently, as our Data Impact Manager, supporting key behind-the-scenes work such as running reports, helping track organizational metrics, and strengthening how we understand and share our impact.

Megan now steps into the role of Program Administrator, bringing 25 years of administrative experience, including more than 20 years with a global engineering and environmental consulting firm. Her time, talent, and passion will help support Team Telomere’s mission, our Executive Leadership Team, and the families we serve.

We are so grateful to have Megan in this role and excited for all that is ahead. Join us in welcoming Megan - and wishing her a happy belated birthday! 💙

05/25/2026

Join us in celebrating Jena Robertson as she steps into her project lead volunteer role as Team Telomere’s Community Chat Coordinator!

Jena first connected with Team Telomere through her daughter, Rori, who was diagnosed with a Telomere Biology Disorder at 18 months old. Her connection with Team Telomere created a commitment to building community, sharing stories, and making sure no family feels alone.

Jena has poured immense light and heart to Team Telomere over the years. She first served as a volunteer and then as our Program Administrator for more than a year, helping move this community forward in countless ways. From sending care packages to families, helping community members find answers and connections, supporting events and programs, and coordinating the many people and moving pieces behind our work, Jena has brought compassion, steadiness, and joy to everything she has touched.

Her impact has been felt across our organization and community. She has shared her family’s story at Cocktails & Chromosomes, helping raise over $75,000 in support of Team Telomere’s mission. She has recorded podcasts, helped coordinate our Micro Meeting, and brought energy to our first Shark Tank Grant competition - dressing up as a shark to moderate.

Jena will continue to make an impact through a program that is near to her heart: Community Chats. As Community Chat Coordinator, she will continue creating spaces where individuals and families impacted by TBDs can connect, learn, ask questions, and feel supported.

In 2025, thanks in large part to Jena’s leadership and dedication, Team Telomere hosted 11 Community Chats and Open Forums, had 147 registrants across chats, and 100% of surveyed community members said their questions were answered.

Jena, thank you for the heart, care, and light you have brought and continue to bring to Team Telomere. We are so thankful for all you have done - and grateful to have you continue serving this community as Community Chat Coordinator. 💙

Team Telomere

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