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Team Telomere

Team Telomere

非盈利组织

Coeur d’ Alene，Idaho 484 位关注者

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

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关于我们

Supporting families worldwide in their battle with Dyskeratosis Congenita and related Telomere Biology Disorders who often face multiple complex illnesses such as bone marrow failure, lung fibrosis, cancer, and many other challenges. Our mission is to provide information and support services to families worldwide affected by Dyskeratosis Congenita and Telomere Biology Disorders, to encourage the medical community’s research in finding causes and effective treatments, and to facilitate improved diagnosis by educating medical providers.

网站
teamtelomere.org
所属行业
非盈利组织
规模
2-10 人
总部
Coeur d’ Alene，Idaho
类型
非营利机构

地点

  • 主要

    1801 North 3rd Street

    Suite #7

    US，Idaho，Coeur d’ Alene，83814

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动态

  • Team Telomere转发了

    查看Uplifting Athletes的组织主页
    Uplifting Athletes

    2,339 位关注者

    ?? Behind every research breakthrough, there’s a passionate advocacy group fighting for answers, resources, and support. Uplifting Athletes is grateful to stand alongside patient advocacy organizations that champion the rare disease community every day. These organizations were key partners in the Young Investigator Draft, helping connect researchers with the support they need to drive progress. To each of these organizations making a difference—thank you. Your dedication brings voices together, turns hope into action, and leads to real change. ?? Team Telomere Be A Tiger Foundation National Tay-Sachs & Allied Diseases Association Pancreatic Cancer Cure Foundation, Inc. Castleman Disease Collaborative Network The Rory Belle Foundation Tatton Brown Rahman Syndrome (TBRS) Community Inc. ASXL Rare Research Endowment Foundation Association for Creatine Deficiencies Project 8p Foundation #YID25 #RareDiseaseResearch #RareDisease #WeTackleRare

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  • Let our scientists know you have their backs. Send us your photos of why you #StandUpForScience2025 and we will feature it in our next newsletter. Read more below ??

    查看Katie Barrett-Stevens的档案
    Katie Barrett-Stevens

    Executive Director | Rare Disease Advocate | Published Citizen-Scientist | Yoga Instructor

    Family and friends, today, Friday March 7th, there will be rallies around the country as part of the Stand Up for Science movement. Between freezing NIH funds, cutting indirect costs, laying off valid scientists from the different sectors of the HHS, and more, science is under attack from the current administration. Without research, we would not have medications, treatments for diseases, vaccines that protect against fatal diseases, etc. Science saves lives. The main rally is in DC, but there could be other rallies happening closer to you. Check out the locations and more information here https://lnkd.in/g_UCE8dZ. If you can’t participate in a rally, you can still do your part. Take a picture with your sign saying that you stand with science and post it on social media with the hashtag #StandUpForScience2025.

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  • Exciting research news for the TBD community! ?? Elixirgen Therapeutics, Inc. has been granted Regenerative Medicine Advanced Therapy (RMAT) designation by the FDA for EXG-34217, a gene therapy for Telomere Biology Disorders (TBDs) with bone marrow failure. This means the therapy will get fast-tracked for development and review, bringing us one step closer to potential treatment options! EXG-34217 is currently in Phase I/II clinical trial and open for enrollment for patients 12 and older. Laboratory data on this therapy shows that it may play a role in extending telomeres of stem cells. This trial is looking to evaluate the safety and tolerability of EXG34217 in individuals with TBDs. More information about the Phase I/II clinical trial can be found under the recruiting research studies section of our website. This designation highlights the need for new therapies and shines light on the progress in TBD research being made! ?? Learn more: https://lnkd.in/et4surw2 #TelomereBiology #RareDisease #GeneTherapy #FDAApproval #TBDResearch #DyskeratosisCongenita

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  • ?? Call to Action! Please read the statement below and share with your community. You can download the 5 calls app and simplify your strategy. https://5calls.org/ It’s going to take all of our voices working together. Thank you!

    查看EveryLife Foundation for Rare Diseases的组织主页
    EveryLife Foundation for Rare Diseases

    12,870 位关注者

    ?? Urgent Action Needed: For the 30 million Americans living with a rare disease, steady federal support for biomedical research and stability at national public health agencies are CRITICAL to advancing lifesaving treatments and initiatives. This weekend’s removal of key experts at The National Institutes of Health FDA, and Centers for Disease Control and Prevention—paired with executive orders impacting federal funding—threatens vital programs that rare disease communities and the entire nation depend on. ??? Tell Congress about the importance of their strong commitment to our federal health agencies?and?to the millions of Americans and families affected by rare diseases. Use this action alert and make your voice heard: https://lnkd.in/eZugK-dw #raredisease #takeaction #policy

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  • 查看Team Telomere的组织主页
    Team Telomere

    484 位关注者

    During February, we celebrate Black History Month. This #BlackHistoryMonth, and every day, we honor the legacy of Black workers, laborers, and activists. Today we notably honor Ms. Henrietta Lacks, the Mother of Modern Medicine. Henrietta Lacks’ cancer cells were taken without her knowledge in 1951 and became the first immortal human cell line, HeLa, revolutionizing medical research with breakthroughs in vaccines, cancer treatments, and more. Her story, largely unknown for decades, raised major ethical questions about consent in medical research and gained recognition with The Immortal Life of Henrietta Lacks (2010). As an organization devoted to patient advocacy, we honor the achievements of Black scholars and health professionals. In addition, we strive to address health disparities in Black communities. Team Telomere is deeply committed to our mission - and know that we cannot understand the basic biology of telomeres without more diversity in research. This month reminds us of the importance of diversity, inclusion, and health equity in everything we do to support those with Telomere Biology Disorders. #BlackHistoryMonth #BlackHistory #CelebrateBlackHistory #ResearchMatters #Cancer #HeLA #Vaccines #RareDiseaseMonth #Telomeres #TeamTelomere #DEI #PatientAdvocacy

    • A Black History Month graphic featuring a black-and-white photograph of Henrietta Lacks in a suit, smiling with her hands on her hips. The background is black with splashes of white paint. The words 'Black History Month' appear in bold red, yellow, and green letters. Surrounding the central image are illustrated portraits of diverse Black individuals with various hairstyles and clothing styles. The 'Team Telomere' logo is in the bottom right corner, featuring a stylized chromosome design in green, orange, and yellow.
  • 查看Team Telomere的组织主页
    Team Telomere

    484 位关注者

    As we promised we would keep you up-to-date on policies and Executive Orders that affect the TBD community. Last Friday evening, the research field received devastating news with the National Institutes of Health’s policy guidance that all indirect costs will be capped at 15% in all grants. Read more : https://lnkd.in/efszqq2g We lead in hope and action. #Telomere #RareDisease #NIH #Grants #BetterTogether

    • A graphic reads Update 2 Call to Action The impact of the 15% NIH cap on indirect costs on Telomere Biology Disorders & our Rare Disease Community
    • Update 2 Call to Action from Team Telomere If a 15% cap on indirect costs is implemented, current research will stop, clinical trials will shut down, research staff will be let go. A critical portion of this funding covers the unavoidable indirect costs of conducting this research, such as keeping the lights on, cleaning the labs, covering administrative costs, and much more. Combined with the ongoing freeze on scientific communication, the Administration continues to take actions that directly harm the research ecosystem by:
    • Proposals that would reduce access to Medicaid & CHIP, a program that ensures more than 70 million Americans – including half of U.S. children – can access affordable healthcare A federal health communications blackout that has disrupted research grantmaking, as well as the medical community’s ability to monitor and study diseases Deletions of references to diversity and health equity on federal health websites, including removal of guidance on how to improve the diversity of clinical trials Steps to prevent the Consumer Financial Protect Bureau from enforcing recent federal protections that prevent medical debt from appearing on the credit reports of an estimated 15 million Americans (Source Leukemia & Lymphoma Society)
    • How you can help? Download the 5 calls App today. This app sets a topic driven script for you and givs you all the contacts to your represetatives. Your voice matters in critical times like this. A QR code sits in the bottom left and a square image of light blue with 5 stars sits in the bottom right.
    • How you can help? Researchers, Researchers, to better communicate impact when we go to the Hill during Rare Disease Week we ask you to take this brief survey. We realize this is nearly impossible to get metrics on but a narrative helps. A QR code sits below the text in the middle.
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  • 查看Team Telomere的组织主页
    Team Telomere

    484 位关注者

    Update to our Call to Action Yesterday, Team Telomere learned that our study section was canceled. It simply stated: Thank you for your application to the Rare Diseases Clinical Research Consortia (RDCRC) for the Rare Diseases Clinical Research Network (RDCRN) (U54 Clinical Trial Optional) funding opportunity. Unfortunately, the Peer Review meeting for the review of your application, to be held on Feb 5-7, 2025, is cancelled. Once we have more information about when this meeting will be rescheduled, we will let you know. We appreciate your understanding. In addition Team Telomere had to pause our Research Roundtables as a number of our researchers stem from the NIH and are not allowed to attend. Patients enrolled in clinical trials are receiving notifications that their teams are not able to respond to them. The broad scope of the current order and the resulting disruptions to scientific activities is concerning, as even a few weeks of delay can cascade into months of setbacks, compounding over time. How You Can Help: ? Fellow Advocacy Groups and US Citizens: ? Email the Senate Finance Committee urging them to oppose the proposed budget provision titled "Eliminate Deduction for Charitable Contributions to Health Organizations" that would eliminate the deduction for charitable contributions to health organizations. If passed, this measure would revoke tax-deductible status for donations to health organizations, including patient advocacy groups like Team Telomere. Without our 501c3 status, not only could we not issue tax receipts, but we also could not accept donations from DAFs and would lose our eligibility for most grants. This would devastate our organization.Read the proposal page 10, #4 : https://lnkd.in/ggJuA-SH ?PAGs sign on to the National Council for Nonprofits letter addressing the above to the 119th Congress. https://lnkd.in/ekmE8BRv ? Use your voice – Contact elected officials to stress the importance of NIH funding. Find your local representative tool through the Everylife Foundation: https://lnkd.in/eeAHX7DS *Dial (202) 224-3121 *Enter your zip code *Leave Voicemail *Say "My name is __________, I am a constituent of _________ in [town]. (If clinician/scientist/patient/caregiver, say) The NIH freeze harms research and patients and must be lifted immediately." BE BRIEF - Staffers tally calls. ?Track any disruptions to your research or research partners. Communicate this to our officials. ?Don’t lose hope, remember it’s a marathon not a sprint! #Telomere #RareDisease #TakeAction #Advocate #ScienceMatters

    • ??1. Image 1: A graphic with a red banner at the top that reads, “UPDATE Call to Action from Team Telomere.” Below, in a navy blue section, the text states, “The Impact of NIH Funding Disruptions and Senate Finance Committee Budget on Telomere Biology Disorders & Our Rare Disease Community.”
    • 2: A similar graphic with a red banner at the top stating, “UPDATE Call to Action from Team Telomere.” The navy blue section is titled “What Impact?” followed by a numbered list: a. “Our recent Study Section was canceled.” b. “Research Roundtables are paused due to NIH researchers not being able to attend.” c. “TBD patients are receiving messages from their trial teams not being able to communicate with them.”
    • 3: A graphic with the same red banner and header. The navy blue section is titled “Patient Advocacy Orgs you can…” followed by a numbered list of actions: a. “Contact the Senate Finance Committee, asking them to eliminate the Deduction for Charitable Contributions to Health Organizations – stripping patient advocacy groups of their 501c3 status.” b. “Sign on to the National Council for Nonprofits letter to the 119th Congress.” c. “Request that your supporters contact their Representatives (please use our templates if needed).” d. “Track disruptions in research.”
    • Image 4: A graphic with the same header and red banner. The navy blue section is titled “What US Citizens can do…” followed by a numbered list: a. “Contact the Senate Finance Committee, asking them to eliminate the Deduction for Charitable Contributions to Health Organizations – stripping patient advocacy groups of their 501c3 status.” b. “Contact your Representatives” with instructions: ? “Dial (202) 224-3121.” ? “Enter your zip code.” ? “Leave Voicemail.” ? Suggested script: “My name is ________, I am a constituent of ________ in [town]. (If clinician/scientist/patient/caregiver, say) The NIH freeze harms research and patients and must be lifted immediately.” Reminder to keep it brief as staffers tally calls.
    • A final graphic with the same red banner and header. The navy blue section contains a message: “Stay up to date by liking, sharing, and following all Team Telomere socials and newsletters. Don’t lose hope, remember it’s a marathon, not a sprint!”
  • 查看Team Telomere的组织主页
    Team Telomere

    484 位关注者

    Team Telomere is so grateful to be advocacy partners with Uplifting Athletes and the Young Investigator Draft! We share Uplifting Athletes’ passion for accelerating scientific advancements for rare disease treatments and potential cures. Uplifting Athletes developed the Young Investigator Draft to support critical research while inspiring the next generation of rare disease researchers. Our pick for this year's Uplifting Athletes Young Investigator Draft is Dr. Helen Reed, Dana-Farber Cancer Institute/Boston Children’s Hospital! Dr. Reed’s project is titled “Deoxynucleoside Therapy in Telomere Biology Disorders: A Phase I Clinical Trial” and aims to explore using nucleoside therapy, which has laboratory data showing promise in supporting telomere maintenance and playing a role in telomere elongation. The project will involve a clinical trial at Boston Children’s Hospital to evaluate the safety and potential benefits of this therapy in individuals with TBDs. Dr. Reed is a dedicated clinical researcher with a strong focus on TBDs. She has experience in clinical study design and a passion for improving therapeutic options, and she will be helping lead the trial. Join us in celebrating and congratulating Dr. Reed! Stay tuned for updates from our Executive Director, Katie Barrett-Stevens, and Board Director, Kendall Davis, MPH, who are attending the Young Investigator Draft in Philadelphia today!

    • A professional portrait of Helen Reed, a researcher in rare blood and genetic disorders at Dana-Farber Cancer Institute and Boston Children’s Hospital. She is smiling and wearing a white lab coat with institutional logos. The background includes a framed picture on the wall. The image design features her name in large green text, with additional text highlighting her research focus and nomination by Team Telomere. The upper-right corner has the Team Telomere logo.
    • A collage-style digital graphic displaying multiple researchers recognized by Team Telomere for their contributions to rare diseases. Each individual has a name, research focus, institution, and nominating organization listed beside their headshot. The background consists of textured blue and green sections, resembling paper cutouts. The Team Telomere logo, featuring interconnected lines in blue, green, and yellow, is at the top. The design conveys collaboration and recognition in the scientific community.
  • 查看Team Telomere的组织主页
    Team Telomere

    484 位关注者

    Join us for our first ever combined Community Chat in partnership with the The Leukemia & Lymphoma Society. The topic is on Molecular Drivers and Genetic Predisposition to Blood Cancers on Thursday, February 20th, at 6 PM ET! ?? By combining LLS’s expertise in hematologic malignancies and Team Telomere’s focus on rare disorders, this initiative fosters collaboration across patient advocacy, education, and research. Together, we aim to empower patients, caregivers, and healthcare professionals with the knowledge to improve outcomes and advocate for innovative therapies. Experts from Dana-Farber Cancer Institute , UCI Health, Salk Institute, and Team Telomere will discuss the connection between Telomere Biology Disorders (TBDs) and blood cancers like MDS and AML. This is an opportunity to learn, ask questions, and engage with experts and advocates in the field. ?? Registration is required – sign up here: https://lnkd.in/g43m7Z_k ?? Hosted by Leukemia & Lymphoma Society (LLS) in collaboration with leading research institutions. Let’s shine a light on the heightened risk of leukemia in TBD patients and work together to advance research and awareness. Don’t miss this important conversation! #BloodCancerAwareness #GeneticPredisposition #TBD #Leukemia #LLS #TeamTelomere #CancerResearch #TelomereBiologyDisorders

    • A dark blue background with white and yellow text announces a “Community Chat” on “Molecular Drivers and Genetic Predisposition to Blood Cancers,” happening Thursday, February 20th, at 6 PM ET. Registration is required. Speakers include Dr. Chris Reilly (Dana-Farber Cancer Institute), Angela Fleischman (UCI Health), Katie Stevens (Team Telomere), and Laura Mainz (Salk Institute). Hosted by the Leukemia & Lymphoma Society (LLS) in partnership with Dana-Farber, UCI Health, and Within Oncology, with circular headshots of the speakers displayed.
    • White text on a dark blue background highlights the collaboration between LLS and Team Telomere to advance research and awareness. It explains that individuals with Telomere Biology Disorders (TBDs) face a higher risk of blood cancers like Myelodysplastic Syndrome (MDS) and Acute Myeloid Leukemia (AML). The post invites participation to raise awareness and educate the community.
    • A dark blue background with white text provides registration details. A QR code and URL (na.eventscloud.com/BloodCancer) offer access to sign up. Contact information for Laura Diaz, LLS Community Outreach Manager, is listed. Logos of LLS, Dana-Farber, UCI Health, and Within Oncology are included.
  • 查看Team Telomere的组织主页
    Team Telomere

    484 位关注者

    Team Telomere is collaborating with the Rare Genomes Project, a free and remote research program using genomic sequencing to look for the genetic cause of rare diseases. We are specifically collaborating to provide an opportunity for genetic testing for families with or suspected to have a Telomere Biology Disorder. The goals of this effort are to increase access to genetic testing for community members and to help discover new genetic changes associated with disease. Participation: Participation in the Rare Genomes Project is remote and free of cost. Eligible families will be asked to provide relevant medical information and a blood sample using a collection kit mailed directly to their home. If a result is found, the RGP study will work with your doctor to confirm the result. Eligible Participants: ??Have a suspected Telomere Biology Disorder, consisting of a telomere length (as clinically measured by flow FISH) less than or equal to the 10th percentile for one’s age ??Have a suspected genetic cause that has not been identified due to a lack of access to genetic testing or prior testing being negative or inconclusive ??Live in the United States To learn more and get started visit our website: https://lnkd.in/g2gP6sKz

    • A graphic with a navy blue header that reads, 'Research Opportunity for families with or suspected to have a Telomere Biology Disorder.' Below is text explaining that Team Telomere is collaborating with the Rare Genomes Project, a free and remote research program using genomic sequencing to investigate the genetic cause of rare diseases. At the bottom are the Rare Genomes Project and Team Telomere logos, along with a website link: https://teamtelomere.org/recruiting-research-studies/. The background features a gradient of yellow, green, and blue.
    • 'Oportunidad de Investigación para familias en quienes se sospeche un síndrome de telómeros cortos.' “Esta es una colaboración del Equipo Telómeros y el Proyecto Genomas Raros (un programa de investigación gratuito y de participación a distancia en el que la secuenciación del genoma se utiliza para buscar la causa genética de enfermedades raras).” At the bottom are the Rare Genomes Project and Team Telomere logos, along with a website link: https://teamtelomere.org/recruiting-research-studies/. The background features a gradient of yellow, green, and blue."

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