The Circle of Hope (COH) Transplant Support Program is designed to support those members of our community navigating not only LAM but the prospect of a lung transplant as well. Our program offers virtual support meetings, educational webinars with experts in the field, tissue donation education, and one-on-one guidance through peer mentoring.
To get started with our COH program, please click the button below and complete this short participation form:
TISSUE DONATION – NATIONAL DISEASE RESEARCH INTERCHANGE (NDRI)
National Disease Research Interchange (NDRI) NDRI’s Private Donor Program gives individuals and their families an opportunity to provide an invaluable resource for researchers working to discover and advance new treatments or cures. A variety of tissue samples from women with LAM, including lung, kidney, uterus, blood and chyle fluid are currently needed by LAM researchers.
Contact info:
To set started with tissue donation, please contact NDRI at one of the following:
The LAM Foundation – NDRI (ndriresource.org)
privatedonor@ndriresource.org
1.800.222.6374 Option 5
If you would like to learn more about the tissue donation process, please contact The LAM Foundations Circle of Hope Program Coordinator at lpaschal@thelamfoundation.org
Resources
Dr Dilling on the Lung Composite Allocation (CAS) score
LAM Handbook – Chapter 6 – Lung Transplantation
Webinars
Register Now: April 10, 2024 – LAM Tissue Donation: Who, What, Why, How with Saboor Shad, Director of Tissue Source Site Management at the NDRI
November 2023 – Lung Allocation based on the Composite Allocation Score with Dr. Dilling
November 2020 – Lung Transplantation in the Time of COVID-19: What has Changed? What has remained the same?
All educational programs sponsored by
Circle of Hope Team
Lisa Paschal – Circle of Hope Coordinator
Lisa had a successful career as a public health dietitian and has a long history with The LAM Foundation as a woman living with LAM who experienced a double lung transplant in 2014. Having been a volunteer mentor, Lisa is now well-equipped to continue spreading hope and knowledge, especially regarding pre- and post-transplant experiences. Read Lisa’s full bio here.
Dan Dilling, MD – Circle of Hope Medical Director
Dan Dilling, MD, LAM Clinic Director at Loyola Medicine, serves as the Circle of Hope Medical Director. Dr. Dilling facilitates connections with transplant centers across the country, providing support and advice to patients and helping to educate patients on the transplant process. Dr. Dilling is also Professor of Medicine at Loyola University Chicago Stritch School of Medicine and the medical director of the Lung Transplantation Program at Loyola.
Testimonials
Karen Kinsey, Patient
“The Circle of Hope” is a natural extension of The LAM Foundation’s well-honed LAM Liaison Program. These two programs offer support, guidance and understanding to Lammies by fellow Lammies, dedicated LAM researchers and The LAM Foundation.
The Circle of Hope Program has helped me face many of the uncertainties associated with lung transplantation. The post-transplant LAM mentors are remarkably knowledgeable resources, who offer guidance as well as abundant compassion and understanding. In addition, the COH Medical Director has been incredibly responsive and insightful. Before, I felt like I was the quarterback of all the decisions concerning my transplant. Now, I know I have several coaches that I can rely on.
I am grateful for the resources The LAM Foundation has committed to the COH Program. The assistance the COH Program has provided me has been invaluable. My hope is that one day, I will be able to give back to the COH Program.”
Zaria Benedict, Patient
“The opportunity to call a LAM sister after transplant is priceless! We understand each other in ways no one else can. I am forever grateful for my mentor! I got advice, information and encouragement I could not have gotten anywhere else. Truly priceless!
This was also an amazing opportunity to donate my old lungs for LAM research. Knowing that my lungs were used for LAM research at several centers gives me great joy and hope. What a blessing to give back and help find a cure!”
Karyn Schad, Mentor