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
When you partner with Team Telomere, you help make this impact possible.
Learn more about partnering with us:
teamtelomere.org/annual-partn...
✨ Stay tuned for our 2026 partners!
Learn more about partnering with us:
teamtelomere.org/annual-partn...
✨ Stay tuned for our 2026 partners!
Annual Partnership Opportunities | Team Telomere
When you partner with Team Telomere, you build with us. Together, we are creating a world where every individual impacted by a TBD is seen, supported, and empowered.
teamtelomere.org
February 18, 2026 at 9:00 PM
When you partner with Team Telomere, you help make this impact possible.
Learn more about partnering with us:
teamtelomere.org/annual-partn...
✨ Stay tuned for our 2026 partners!
Learn more about partnering with us:
teamtelomere.org/annual-partn...
✨ Stay tuned for our 2026 partners!
• Delivered 500+ clinical & educational resources
• Funded $250K+ in research and supported clinical trials
• Strengthened Centers of Excellence partnerships
• Delivered care packages & legacy boxes
• Engaged globally at medical & scientific conferences
• Funded $250K+ in research and supported clinical trials
• Strengthened Centers of Excellence partnerships
• Delivered care packages & legacy boxes
• Engaged globally at medical & scientific conferences
Annual Partnership Opportunities | Team Telomere
When you partner with Team Telomere, you build with us. Together, we are creating a world where every individual impacted by a TBD is seen, supported, and empowered.
teamtelomere.org
February 18, 2026 at 9:00 PM
• Delivered 500+ clinical & educational resources
• Funded $250K+ in research and supported clinical trials
• Strengthened Centers of Excellence partnerships
• Delivered care packages & legacy boxes
• Engaged globally at medical & scientific conferences
• Funded $250K+ in research and supported clinical trials
• Strengthened Centers of Excellence partnerships
• Delivered care packages & legacy boxes
• Engaged globally at medical & scientific conferences
This past year, together we:
• Supported 700+ community members
• Connected 300+ clinicians & researchers
• Reached multiple countries through global advocacy
• Hosted a scientific convening with 120 attendees from 11+ countries
• Supported 700+ community members
• Connected 300+ clinicians & researchers
• Reached multiple countries through global advocacy
• Hosted a scientific convening with 120 attendees from 11+ countries
Annual Partnership Opportunities | Team Telomere
When you partner with Team Telomere, you build with us. Together, we are creating a world where every individual impacted by a TBD is seen, supported, and empowered.
teamtelomere.org
February 18, 2026 at 9:00 PM
This past year, together we:
• Supported 700+ community members
• Connected 300+ clinicians & researchers
• Reached multiple countries through global advocacy
• Hosted a scientific convening with 120 attendees from 11+ countries
• Supported 700+ community members
• Connected 300+ clinicians & researchers
• Reached multiple countries through global advocacy
• Hosted a scientific convening with 120 attendees from 11+ countries
Our community is at the heart of everything we do. From diagnosis through lifelong care, Team Telomere provides trusted information, connection, advocacy, and hope for patients, caregivers, clinicians, and researchers.
February 18, 2026 at 9:00 PM
Our community is at the heart of everything we do. From diagnosis through lifelong care, Team Telomere provides trusted information, connection, advocacy, and hope for patients, caregivers, clinicians, and researchers.
Link to donate: teamtelomere.networkforgood.com/projects/294...
#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth #TelomereBiologyDisorders #RareDiseaseResearch #LegacyThroughResearch #HopeThroughScience #AdvocacyInAction #ResearchMatters #Bereavement #TransformationalResearch #Liver #BMF
#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth #TelomereBiologyDisorders #RareDiseaseResearch #LegacyThroughResearch #HopeThroughScience #AdvocacyInAction #ResearchMatters #Bereavement #TransformationalResearch #Liver #BMF
Katie Runs for Rare & Rural
I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…
teamtelomere.networkforgood.com
February 18, 2026 at 5:45 PM
Chad’s legacy now lives on through research. His wife, through Team Telomere, established the Carson Family Telomere Biology Disorder Research Award, designed to accelerate bold, high-impact TBD science.
You can read more about this grant here: teamtelomere.org/carson-famil...
💜🩷💚
You can read more about this grant here: teamtelomere.org/carson-famil...
💜🩷💚
Carson Family Telomere Biology Disorder Research Award | Team Telomere
The primary goal of the Carson Family Telomere Biology Disorder Research Award from Team Telomere, Inc. is to support research initiatives that address critical gaps in our understanding of Telomere…
teamtelomere.org
February 18, 2026 at 5:45 PM
Chad’s legacy now lives on through research. His wife, through Team Telomere, established the Carson Family Telomere Biology Disorder Research Award, designed to accelerate bold, high-impact TBD science.
You can read more about this grant here: teamtelomere.org/carson-famil...
💜🩷💚
You can read more about this grant here: teamtelomere.org/carson-famil...
💜🩷💚
Chad passed away in 2019 at just 47 years old, after enduring a medical journey no family should have to navigate. Chad said he wished to be remembered simply as “smart and nice.” His family and friends continue to honor him by living those values every day.
Carson Family Telomere Biology Disorder Research Award | Team Telomere
The primary goal of the Carson Family Telomere Biology Disorder Research Award from Team Telomere, Inc. is to support research initiatives that address critical gaps in our understanding of Telomere…
teamtelomere.org
February 18, 2026 at 5:45 PM
Chad passed away in 2019 at just 47 years old, after enduring a medical journey no family should have to navigate. Chad said he wished to be remembered simply as “smart and nice.” His family and friends continue to honor him by living those values every day.
They returned to the United States with the hope of pursuing a bone marrow transplant, but the transplant failed to engraft.
Carson Family Telomere Biology Disorder Research Award | Team Telomere
The primary goal of the Carson Family Telomere Biology Disorder Research Award from Team Telomere, Inc. is to support research initiatives that address critical gaps in our understanding of Telomere…
teamtelomere.org
February 18, 2026 at 5:45 PM
They returned to the United States with the hope of pursuing a bone marrow transplant, but the transplant failed to engraft.
What followed was an all-hands-on-deck effort driven by love and determination. Chad and his wife, Heidi, searched the globe for answers, ultimately traveling to Seoul, South Korea, where Heidi donated the right lobe of her liver to Chad.
Carson Family Telomere Biology Disorder Research Award | Team Telomere
The primary goal of the Carson Family Telomere Biology Disorder Research Award from Team Telomere, Inc. is to support research initiatives that address critical gaps in our understanding of Telomere…
teamtelomere.org
February 18, 2026 at 5:45 PM
What followed was an all-hands-on-deck effort driven by love and determination. Chad and his wife, Heidi, searched the globe for answers, ultimately traveling to Seoul, South Korea, where Heidi donated the right lobe of her liver to Chad.
It wasn’t until Chad was diagnosed with bone marrow failure, alongside advanced liver disease, that the underlying cause came into focus: a telomere biology disorder connecting what had gone unexplained for far too long.
Carson Family Telomere Biology Disorder Research Award | Team Telomere
The primary goal of the Carson Family Telomere Biology Disorder Research Award from Team Telomere, Inc. is to support research initiatives that address critical gaps in our understanding of Telomere…
teamtelomere.org
February 18, 2026 at 5:45 PM
It wasn’t until Chad was diagnosed with bone marrow failure, alongside advanced liver disease, that the underlying cause came into focus: a telomere biology disorder connecting what had gone unexplained for far too long.
Chad was the kind of person who lived fully and generously. For years, even as his liver quietly deteriorated for reasons no one could explain, he biked to work, traveled the world with his wife and children, and embraced life with optimism and purpose.
Carson Family Telomere Biology Disorder Research Award | Team Telomere
The primary goal of the Carson Family Telomere Biology Disorder Research Award from Team Telomere, Inc. is to support research initiatives that address critical gaps in our understanding of Telomere…
teamtelomere.org
February 18, 2026 at 5:45 PM
Chad was the kind of person who lived fully and generously. For years, even as his liver quietly deteriorated for reasons no one could explain, he biked to work, traveled the world with his wife and children, and embraced life with optimism and purpose.
Today, we honor Chad Carson. Katie will be running the Corvallis ½ in honor of Chad.
February 18, 2026 at 5:45 PM
Today, we honor Chad Carson. Katie will be running the Corvallis ½ in honor of Chad.
💜 You can honor community members like Jeni by supporting Research Season, through learning, advocacy, and investing in the research that creates brighter days.
💜🩷💚
Link to donate: teamtelomere.networkforgood.com/projects/294...
#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth
💜🩷💚
Link to donate: teamtelomere.networkforgood.com/projects/294...
#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth
Katie Runs for Rare & Rural
I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…
teamtelomere.networkforgood.com
February 17, 2026 at 9:50 PM
💜 You can honor community members like Jeni by supporting Research Season, through learning, advocacy, and investing in the research that creates brighter days.
💜🩷💚
Link to donate: teamtelomere.networkforgood.com/projects/294...
#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth
💜🩷💚
Link to donate: teamtelomere.networkforgood.com/projects/294...
#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth
During her time in leadership, Jeni brought the voice of a parent, educator, and patient advocate, working to strengthen resources for young adults navigating TBDs.
Katie Runs for Rare & Rural
I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…
teamtelomere.networkforgood.com
February 17, 2026 at 9:50 PM
During her time in leadership, Jeni brought the voice of a parent, educator, and patient advocate, working to strengthen resources for young adults navigating TBDs.
Their first experience at Camp Sunshine in 2016 was transformative, bringing unparalleled connection and support. Jeni went on to serve on Team Telomere’s Outreach Committee before joining the Board of Directors in 2019, where she remained through 2025.
Katie Runs for Rare & Rural
I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…
teamtelomere.networkforgood.com
February 17, 2026 at 9:50 PM
Their first experience at Camp Sunshine in 2016 was transformative, bringing unparalleled connection and support. Jeni went on to serve on Team Telomere’s Outreach Committee before joining the Board of Directors in 2019, where she remained through 2025.
Like many families, Jeni describes the early days from diagnosis as overwhelming. It wasn’t until they found DC Outreach - now Team Telomere - that the isolation began to lift. Through community connection, and trusted guidance, Jeni and her family found understanding and hope.
Katie Runs for Rare & Rural
I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…
teamtelomere.networkforgood.com
February 17, 2026 at 9:50 PM
Like many families, Jeni describes the early days from diagnosis as overwhelming. It wasn’t until they found DC Outreach - now Team Telomere - that the isolation began to lift. Through community connection, and trusted guidance, Jeni and her family found understanding and hope.
Jeni’s journey with telomere biology disorders began in 2015, when her daughter Megan was diagnosed with bone marrow failure and a telomere biology disorder. Genetic testing revealed a novel TERT gene variant - not only in Megan, but in Jeni as well.
Katie Runs for Rare & Rural
I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…
teamtelomere.networkforgood.com
February 17, 2026 at 9:50 PM
Jeni’s journey with telomere biology disorders began in 2015, when her daughter Megan was diagnosed with bone marrow failure and a telomere biology disorder. Genetic testing revealed a novel TERT gene variant - not only in Megan, but in Jeni as well.
As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February, highlighting the people whose lived experiences, leadership, and advocacy shape our community and move this work forward.
Today, we honor Jeni Colter.
Today, we honor Jeni Colter.
Katie Runs for Rare & Rural
I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…
teamtelomere.networkforgood.com
February 17, 2026 at 9:50 PM
As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February, highlighting the people whose lived experiences, leadership, and advocacy shape our community and move this work forward.
Today, we honor Jeni Colter.
Today, we honor Jeni Colter.
Continuing to honor Rare Disease Month, Team Telomere is carrying forward Research Season, supporting research that expands options and advances care for people living with telomere biology disorders.
February 17, 2026 at 9:50 PM
Continuing to honor Rare Disease Month, Team Telomere is carrying forward Research Season, supporting research that expands options and advances care for people living with telomere biology disorders.
Team Telomere staff will be on hand to provide tech support and help facilitate connections. We look forward to seeing you there. Register today! teamtelomere.org/resources/co...
Community Chats | Team Telomere
Team Telomere made Community Chats to be safe spaces for those in the Telomere Biology Disorder community to connect with others, ask questions to experts in the fields, and learn more about TBDs.…
teamtelomere.org
February 16, 2026 at 10:00 PM
Team Telomere staff will be on hand to provide tech support and help facilitate connections. We look forward to seeing you there. Register today! teamtelomere.org/resources/co...
Join us for our February Community Chat on Saturday February 28th at 7pm ET! This month’s chat is a special chat held for Rare Disease month! Grab your favorite drink, put on your Team Telomere gear and join us for an hour of fun times and great conversations!
February 16, 2026 at 10:00 PM
Join us for our February Community Chat on Saturday February 28th at 7pm ET! This month’s chat is a special chat held for Rare Disease month! Grab your favorite drink, put on your Team Telomere gear and join us for an hour of fun times and great conversations!
💜 You can support individuals like Aidan by following Research Season, learning more about telomere biology disorders, or donating to advance research and care.
💜🩷💚
Link to donate: teamtelomere.networkforgood.com/projects/294...
#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth
💜🩷💚
Link to donate: teamtelomere.networkforgood.com/projects/294...
#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth
Katie Runs for Rare & Rural
I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…
teamtelomere.networkforgood.com
February 16, 2026 at 8:25 PM
💜 You can support individuals like Aidan by following Research Season, learning more about telomere biology disorders, or donating to advance research and care.
💜🩷💚
Link to donate: teamtelomere.networkforgood.com/projects/294...
#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth
💜🩷💚
Link to donate: teamtelomere.networkforgood.com/projects/294...
#26for26 #TeamTelomere #ResearchSeason #RareDiseaseMonth
Today, Aidan remains positive, grounded, and determined not to let his diagnosis define him. His journey reflects the power of research, expert care, and community support - and why continued investment in telomere research matters.
Katie Runs for Rare & Rural
I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…
teamtelomere.networkforgood.com
February 16, 2026 at 8:25 PM
Today, Aidan remains positive, grounded, and determined not to let his diagnosis define him. His journey reflects the power of research, expert care, and community support - and why continued investment in telomere research matters.
As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February, shining light on the lived experiences that guide our work and remind us why this research matters.
Today, we honor Aidan.
Today, we honor Aidan.
Katie Runs for Rare & Rural
I’m honored to be running in the 2026 United Airlines NYC Half on behalf of the EveryLife Foundation for Rare Diseases. This race is more than a personal challenge - it’s a commitment to the 30…
teamtelomere.networkforgood.com
February 16, 2026 at 8:25 PM
As part of our 26 for 26 campaign, we are honoring 26 individuals throughout February, shining light on the lived experiences that guide our work and remind us why this research matters.
Today, we honor Aidan.
Today, we honor Aidan.
Continuing through Rare Disease Month, Team Telomere is carrying forward Research Season, supporting research that expands understanding, improves care, and builds a future with more options for people living with telomere biology disorders.
February 16, 2026 at 8:25 PM
Continuing through Rare Disease Month, Team Telomere is carrying forward Research Season, supporting research that expands understanding, improves care, and builds a future with more options for people living with telomere biology disorders.