Team Telomere
@teamtelomere.bsky.social
Nonprofit organization
International advocacy for those treating, researching, and affected by Telomere Biology Disorder. #TeamTelomere #DyskeratosisCongenita
International advocacy for those treating, researching, and affected by Telomere Biology Disorder. #TeamTelomere #DyskeratosisCongenita
Continuing to honor Rare Disease Month, Team Telomere is advancing Research Season, supporting research that brings understanding, options, and hope to families living with telomere biology disorders.
February 14, 2026 at 9:00 PM
Continuing to honor Rare Disease Month, Team Telomere is advancing Research Season, supporting research that brings understanding, options, and hope to families living with telomere biology disorders.
This Valentine’s Day, we celebrate the most powerful kind of love - the kind that saves lives. ❤️
Today is also National Donor Day! In the telomere biology disorder community, patients often depend on bone marrow, lung, and liver donors to survive.
Today is also National Donor Day! In the telomere biology disorder community, patients often depend on bone marrow, lung, and liver donors to survive.
February 14, 2026 at 4:46 PM
This Valentine’s Day, we celebrate the most powerful kind of love - the kind that saves lives. ❤️
Today is also National Donor Day! In the telomere biology disorder community, patients often depend on bone marrow, lung, and liver donors to survive.
Today is also National Donor Day! In the telomere biology disorder community, patients often depend on bone marrow, lung, and liver donors to survive.
February is Black History Month. We honor Henrietta Lacks, whose HeLa cells transformed modern medicine - while recommitting to ethical, inclusive research rooted in consent and dignity. At Team Telomere, patient partnership, trust, and equity drive better science for all.
February 13, 2026 at 9:00 PM
February is Black History Month. We honor Henrietta Lacks, whose HeLa cells transformed modern medicine - while recommitting to ethical, inclusive research rooted in consent and dignity. At Team Telomere, patient partnership, trust, and equity drive better science for all.
Continuing to honor Rare Disease Month, Team Telomere is moving forward with Research Season, supporting research that expands understanding and improves care for people living with telomere biology disorders.
February 13, 2026 at 5:00 PM
Continuing to honor Rare Disease Month, Team Telomere is moving forward with Research Season, supporting research that expands understanding and improves care for people living with telomere biology disorders.
Continuing to honor Rare Disease Month, Team Telomere is carrying forward Research Season, raising funds to support research that improves understanding and expands treatment options for telomere biology disorders.
February 12, 2026 at 7:00 PM
Continuing to honor Rare Disease Month, Team Telomere is carrying forward Research Season, raising funds to support research that improves understanding and expands treatment options for telomere biology disorders.
Team Telomere is carrying forward Research Season, supporting research that improves care, expands options, and builds a better future for people living with telomere biology disorders.
As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February.
As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February.
February 10, 2026 at 6:55 PM
Team Telomere is carrying forward Research Season, supporting research that improves care, expands options, and builds a better future for people living with telomere biology disorders.
As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February.
As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February.
Today, we honor our 26er, Lorelei (Rori) Robertson. Standing beside Rori every step of the way has been her mom, Jena. When Rori was first diagnosed, Jena recalls feeling completely alone, until finding connection and support through Team Telomere.
February 9, 2026 at 5:48 PM
Today, we honor our 26er, Lorelei (Rori) Robertson. Standing beside Rori every step of the way has been her mom, Jena. When Rori was first diagnosed, Jena recalls feeling completely alone, until finding connection and support through Team Telomere.
Honoring Rare Disease Month, Team Telomere is moving forward with Research Season, raising funds to support research that improves care and outcomes for people living with telomere biology disorders.
As part of our 26 for 26 campaign, we are honoring 26 individuals.
Today, we honor Gabby Stephens.
As part of our 26 for 26 campaign, we are honoring 26 individuals.
Today, we honor Gabby Stephens.
February 8, 2026 at 6:02 PM
Honoring Rare Disease Month, Team Telomere is moving forward with Research Season, raising funds to support research that improves care and outcomes for people living with telomere biology disorders.
As part of our 26 for 26 campaign, we are honoring 26 individuals.
Today, we honor Gabby Stephens.
As part of our 26 for 26 campaign, we are honoring 26 individuals.
Today, we honor Gabby Stephens.
As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February, sharing the lived experiences that guide our mission and remind us why this work matters. Join Katie in her miles by donating $26 for 26 miles!
Today, we honor our 26er, Harrison.
Today, we honor our 26er, Harrison.
February 7, 2026 at 5:57 PM
As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February, sharing the lived experiences that guide our mission and remind us why this work matters. Join Katie in her miles by donating $26 for 26 miles!
Today, we honor our 26er, Harrison.
Today, we honor our 26er, Harrison.
Today, we honor Damian Carbajal.
After serving in the U.S. Air Force, Damian’s health journey led to a diagnosis of short telomere syndrome with dyskeratosis congenita and bone marrow failure. In 2023, he underwent two bone marrow transplants, extensive treatment, and prolonged hospitalizations.
After serving in the U.S. Air Force, Damian’s health journey led to a diagnosis of short telomere syndrome with dyskeratosis congenita and bone marrow failure. In 2023, he underwent two bone marrow transplants, extensive treatment, and prolonged hospitalizations.
February 6, 2026 at 4:45 PM
Today, we honor Damian Carbajal.
After serving in the U.S. Air Force, Damian’s health journey led to a diagnosis of short telomere syndrome with dyskeratosis congenita and bone marrow failure. In 2023, he underwent two bone marrow transplants, extensive treatment, and prolonged hospitalizations.
After serving in the U.S. Air Force, Damian’s health journey led to a diagnosis of short telomere syndrome with dyskeratosis congenita and bone marrow failure. In 2023, he underwent two bone marrow transplants, extensive treatment, and prolonged hospitalizations.
Today’s #26for26for26 honoree is Kyndall Sewing (age 11) 💜
About 30% of TBD patients don’t have an identifiable gene-fueling our push for research. Kyndall, a creative artist and proud sister, received a bone marrow transplant at age 5 and continues to shine with strength and joy.
About 30% of TBD patients don’t have an identifiable gene-fueling our push for research. Kyndall, a creative artist and proud sister, received a bone marrow transplant at age 5 and continues to shine with strength and joy.
February 5, 2026 at 11:00 PM
Today’s #26for26for26 honoree is Kyndall Sewing (age 11) 💜
About 30% of TBD patients don’t have an identifiable gene-fueling our push for research. Kyndall, a creative artist and proud sister, received a bone marrow transplant at age 5 and continues to shine with strength and joy.
About 30% of TBD patients don’t have an identifiable gene-fueling our push for research. Kyndall, a creative artist and proud sister, received a bone marrow transplant at age 5 and continues to shine with strength and joy.
February is #BlackHistoryMonth. We honor the resilience, courage, and hope of Black individuals past and present - especially within the rare disease community. We also recognize leaders like Dr. Charles Drew, whose groundbreaking work in blood banking continues to save lives.
February 5, 2026 at 7:04 PM
February is #BlackHistoryMonth. We honor the resilience, courage, and hope of Black individuals past and present - especially within the rare disease community. We also recognize leaders like Dr. Charles Drew, whose groundbreaking work in blood banking continues to save lives.
Calling all centers serving individuals with Telomere Biology Disorders!
Team Telomere is expanding our Centers of Excellence network to advance coordinated, high-quality TBD care, research, and advocacy.
Applications due April 17, 2026 (5PM ET).
Team Telomere is expanding our Centers of Excellence network to advance coordinated, high-quality TBD care, research, and advocacy.
Applications due April 17, 2026 (5PM ET).
February 4, 2026 at 4:01 PM
Calling all centers serving individuals with Telomere Biology Disorders!
Team Telomere is expanding our Centers of Excellence network to advance coordinated, high-quality TBD care, research, and advocacy.
Applications due April 17, 2026 (5PM ET).
Team Telomere is expanding our Centers of Excellence network to advance coordinated, high-quality TBD care, research, and advocacy.
Applications due April 17, 2026 (5PM ET).
Today’s #26for26for26 honoree is Amanda Curry 💜
Born with a TERC gene mutation, Amanda was diagnosed with dyskeratosis congenita at 29 and underwent two bone marrow transplants in 2021. A wife, mama of two, and Team
Born with a TERC gene mutation, Amanda was diagnosed with dyskeratosis congenita at 29 and underwent two bone marrow transplants in 2021. A wife, mama of two, and Team
February 3, 2026 at 10:01 PM
Today’s #26for26for26 honoree is Amanda Curry 💜
Born with a TERC gene mutation, Amanda was diagnosed with dyskeratosis congenita at 29 and underwent two bone marrow transplants in 2021. A wife, mama of two, and Team
Born with a TERC gene mutation, Amanda was diagnosed with dyskeratosis congenita at 29 and underwent two bone marrow transplants in 2021. A wife, mama of two, and Team
February is #RareDiseaseMonth. Rare disease is everyday for our Team Telomere community - so we’re launching Research Season 💜
First up: #26for26for26 as Katie runs TWO half marathons to fund research.
Today, we honor the life of Kaitlin Dillion, whose courage reminds us why this work matters.
First up: #26for26for26 as Katie runs TWO half marathons to fund research.
Today, we honor the life of Kaitlin Dillion, whose courage reminds us why this work matters.
February 2, 2026 at 10:00 PM
February is #RareDiseaseMonth. Rare disease is everyday for our Team Telomere community - so we’re launching Research Season 💜
First up: #26for26for26 as Katie runs TWO half marathons to fund research.
Today, we honor the life of Kaitlin Dillion, whose courage reminds us why this work matters.
First up: #26for26for26 as Katie runs TWO half marathons to fund research.
Today, we honor the life of Kaitlin Dillion, whose courage reminds us why this work matters.
We’re excited to spotlight new IPF genetics research in The Lancet Respiratory Medicine by Team Telomere & Uplifting Athletes’ 2026 YID pick, Dr. David Zhang. The study shows shortened telomeres increase IPF risk—and that IPF has multiple genetic pathways. 🧬
February 2, 2026 at 5:45 PM
We’re excited to spotlight new IPF genetics research in The Lancet Respiratory Medicine by Team Telomere & Uplifting Athletes’ 2026 YID pick, Dr. David Zhang. The study shows shortened telomeres increase IPF risk—and that IPF has multiple genetic pathways. 🧬
We are thrilled to announce that registration is now OPEN for the Team Telomere Scientific & Community Summit 2026, taking place July 7 to 10, 2026, in Missoula, Montana!
January 31, 2026 at 5:06 PM
We are thrilled to announce that registration is now OPEN for the Team Telomere Scientific & Community Summit 2026, taking place July 7 to 10, 2026, in Missoula, Montana!
January is National Blood Donor Month, designated in 1969, and it’s especially close to our hearts at Team Telomere. Many in our community rely on blood transfusions, sometimes regularly, sometimes at critical moments in their care.
January 28, 2026 at 11:41 PM
January is National Blood Donor Month, designated in 1969, and it’s especially close to our hearts at Team Telomere. Many in our community rely on blood transfusions, sometimes regularly, sometimes at critical moments in their care.
Super Bowl Sunday is just two weeks away!
If you’re doing Super Bowl squares this year, consider making Team Telomere part of the fun!
If you’re doing Super Bowl squares this year, consider making Team Telomere part of the fun!
January 27, 2026 at 8:21 PM
Super Bowl Sunday is just two weeks away!
If you’re doing Super Bowl squares this year, consider making Team Telomere part of the fun!
If you’re doing Super Bowl squares this year, consider making Team Telomere part of the fun!
We're excited to share groundbreaking news from the International Society for Heart and Lung Transplantation (ISHLT)! Swipe through our graphic to learn what this means and read a summary of the key recommendations. teamtelomere.org/research-cor...
January 22, 2026 at 3:12 PM
We're excited to share groundbreaking news from the International Society for Heart and Lung Transplantation (ISHLT)! Swipe through our graphic to learn what this means and read a summary of the key recommendations. teamtelomere.org/research-cor...
Team Telomere is incredibly grateful to partner with Citizen Health. We believe this platform will help support our community and address questions that matter most to those living with TBDs.
January 21, 2026 at 8:36 PM
Team Telomere is incredibly grateful to partner with Citizen Health. We believe this platform will help support our community and address questions that matter most to those living with TBDs.
We have been receiving questions about the recently-opened Telomere Biology Disorder clinical trial: Nucleoside Therapy in Patients With Telomere Biology Disorders. Team
January 20, 2026 at 8:01 PM
We have been receiving questions about the recently-opened Telomere Biology Disorder clinical trial: Nucleoside Therapy in Patients With Telomere Biology Disorders. Team
Today we honor Dr. Martin Luther King Jr. and his call to action: “The fierce urgency of now… no time for apathy or complacency.”
January 19, 2026 at 8:00 PM
Today we honor Dr. Martin Luther King Jr. and his call to action: “The fierce urgency of now… no time for apathy or complacency.”
This week, we teased that something exciting was on the skyline - and today, we are beyond thrilled to share the news.
First and foremost, today is our Executive Director, Katie Stevens’ birthday!
First and foremost, today is our Executive Director, Katie Stevens’ birthday!
January 17, 2026 at 5:30 PM
This week, we teased that something exciting was on the skyline - and today, we are beyond thrilled to share the news.
First and foremost, today is our Executive Director, Katie Stevens’ birthday!
First and foremost, today is our Executive Director, Katie Stevens’ birthday!
We created the Community Experience Survey 2026 to hear from individuals and families receiving TBD care at medical centers, including Team Telomere’s Centers of Excellence. This is your opportunity to shape the future of TBD care. The survey takes just 2 to 5 minutes to complete: bit.ly/49AUtc4.
January 16, 2026 at 10:32 PM
We created the Community Experience Survey 2026 to hear from individuals and families receiving TBD care at medical centers, including Team Telomere’s Centers of Excellence. This is your opportunity to shape the future of TBD care. The survey takes just 2 to 5 minutes to complete: bit.ly/49AUtc4.