Lung Transplant Foundation

Join us on BOS Education Day October 25, 2024, as we unite hope to end Bronchiolitis Obliterans Syndrome. To gain a deeper understanding of Bronchiolitis Obliterans Syndrome (BOS), we invite you to participate in our customized educational sessions. These sessions are designed to provide you with the knowledge you need to better understand a BOS diagnosis. ? Demystifying CLAD: A focus on Improving long-term lung health post-transplant-9 a.m. ET ? The Road to New Treatments: Clinical Trial Education and Awareness - 10 a.m. ET ? Strength in Community: The Joseph J. Carter Mentorship Program for Patients and Caregivers - 11 a.m. ET ? New and Emerging Technologies and Research - 1 p.m. ET ? Medication Mastery 2.0: Beyond the Basics - 2 p.m. ET ? Transplant Talk: Voices of Experience: Patient insights on living with BOS - 3 p.m. ET Visit our website to register to attend one or all of these informative sessions. https://lnkd.in/dkfzM4vH Sessions will be recorded and will be on our website for you to access if you aren't able to attend. #BOSeducationDay #unitetobreath #BOS #transplant #lung #lungtransplant #transplantlife #raredisease #transplantjourney

RESEARCH STUDY FOR PEOPLE WITH CLAD? Have you been diagnosed with CLAD (Chronic Lung Rejection) stage 1 or 2? If so, this clinical study is looking for participants.? This clinical study is called EFC17801-ROCKaspire. It is being done to see how safe and effective Belumosudil, a study drug, is compared to a placebo (a similar-looking tablet having no real medicine) to treat adults with Stage 1 or 2 CLAD. Link to Sanofistudies.com / CLAD https://lnkd.in/g6y6nzEu #sponsored by Sanofi

ESTUDIO DE INVESTIGACIóN PARA PERSONAS CON CLAD ?Le han diagnosticado CLAD (disfunción crónica de aloinjerto pulmonar) en etapa 1 o 2? Si es así, este estudio clínico busca participantes. Este estudio clínico se llama EFC17801-ROCKaspire. Se realiza para ver qué tan seguro y eficaz es belumosudil, un medicamento del estudio, en?comparación con un placebo (un comprimido de aspecto similar que no tiene medicamento real) para tratar a adultos con CLAD pulmonar en etapa 1 o 2. Enlace a Sanofistudies.com/CLAD #patrocinado por Sanofi

Are your transplant incision scars tight, inflamed, raised, painful, or overly sensitive? Do you feel like you have a tight band around your chest constricting your breathing? If so, this Transplant Talk is for you! Come learn from Diana Thompson, a highly experienced massage therapist, why your scars are acting up and what you can do at home to help yourself feel better and breathe easier. Diana will discuss various scar tissue massage techniques that can provide relief. We will also hear from Todd Ware, a bilateral lung transplant recipient who is also a massage therapist, as he shares his personal experience before and after starting scar tissue massage on his transplant incision area. If your surgical scars are causing you discomfort, you do not need to tough it out! Join us this Thursday, March 20 at 7:00 pm EDT for this online Transplant Talk and start feeling better now. Register at: https://lnkd.in/e_byYAHv #scartissuemassage #lungtransplant #lungtransplantrecipient #transplantjourney #transplanttalk

Executive Director Amy Skiba and Board President Harry Collins spent two impactful days in Washington, DC, exploring the latest advancements in lung transplant technology. LTF was honored to be hosted by United Therapeutics Corporation where we learned about Ex Vivo Lung Perfusion (EVLP)—a technology that helps save more donor lungs for transplant. We also connected with other patient advocacy organizations to better understand the challenges transplant patients face on their journey and how we collectively tackle the issues. At LTF, we are committed to understanding our community’s needs and being a continued resource for education, support, and mentorship. ?? Learn more about this technology: https://lnkd.in/eZH3f6rY #LungTransplantInnovation #SavingLives #OrganDonation #LungTransplant Sandra Rivas-Fuentes Brittany Davis Harry Collins

ESTUDIO DE INVESTIGACIóN PARA PERSONAS CON CLAD ?Le han diagnosticado CLAD (disfunción crónica de aloinjerto pulmonar) en etapa 1 o 2? Si es así, este estudio clínico busca participantes. Este estudio clínico se llama EFC17801-ROCKaspire. Se realiza para ver qué tan seguro y eficaz es belumosudil, un medicamento del estudio, en?comparación con un placebo (un comprimido de aspecto similar que no tiene medicamento real) para tratar a adultos con CLAD pulmonar en etapa 1 o 2. Enlace a Sanofistudies.com/CLAD #patrocinado por Sanofi

RESEARCH STUDY FOR PEOPLE WITH CLAD? Have you been diagnosed with CLAD (Chronic Lung Rejection) stage 1 or 2? If so, this clinical study is looking for participants.? This clinical study is called EFC17801-ROCKaspire. It is being done to see how safe and effective Belumosudil, a study drug, is compared to a placebo (a similar-looking tablet having no real medicine) to treat adults with Stage 1 or 2 CLAD. Link to Sanofistudies.com / CLAD https://lnkd.in/g6y6nzEu #sponsored by Sanofi

A major step forward in organ transplant reform! HRSA has awarded multiple contracts to modernize the U.S. organ transplant system, enhancing patient safety, transparency, and efficiency. This is a vital change for the 100,000+ people on the transplant waitlist. Learn more about how this initiative will shape the future of organ donation https://lnkd.in/eivRG76Y

Join us for the next installment of our Transplant Talk, featuring expert speaker, Rebecca Hobbs-Lawrence. On Thursday, Sept 19 at 7PM ET this informative session will focus on the power of honoring our losses. Lung transplant recipients and their caregivers may experience many different types of losses over the course of their lifetimes. Prior to our transplant, recipients may lose parts of our self-identification, our physical health or independence, or access to activities we once enjoyed or defined ourselves by. We may lose our standard role within our friend or family group. Many of us lose multiple friends within the transplant community to rejection, infection, or other causes. Our caregivers experience losses as well. They may lose the type of relationship they imagined, opportunities for professional advancement, free time for hobbies or personal growth, or experience negative changes in their own body due to the rigors of caretaking responsibilities. How can we incorporate and process all of these losses while still feeling grateful for our second chance at life? We invite you to explore this important topic alongside Rebecca Hobbs-Lawrence, the coordinator of the Pathways Program for families who have an advanced serious illness, who has been working at the Dougy Center for more than twenty years. Rebecca will help us to name and understand our losses, and to place them in the larger context of the joy and freedom that a lung transplant can bring. This understanding will help our community develop resiliency skills in the face of these ongoing losses. We will also hear from Lavetta Smith, a bilateral lung transplant recipient who has just achieved her first lungaversary! Lavetta is a passionate advocate for discussing the emotional aspects of the lung transplant process and was recently featured in a Washington Post documentary about the power of support groups. Share this post with your networks and sign up today! https://lnkd.in/eniXfwUv