In early 2016, we received the devastating news of Pam’s diagnosis with IPF, an incurable Interstitial Lung Disease (ILD). Soon after, we connected with Dr. Hilary Goldberg at Brigham and Women’s Hospital. To have one of the world’s leading experts in Interstitial Lung Diseases and IPF in particular leading our care team was a saving grace, and I am forever grateful. The only option to save Pam’s life was to have a lung transplant and there began our relationship with the Lung Transplant team. Words do not do justice to describe the amazing medical and psychological support we received from the entire Lung Transplant team during every step of Pam’s journey. The Lung Transplant team truly became part of our family as Pam prepared for the possibility of the transplant and beyond. On June 10, 2017, our hope became a reality and Pam received the miracle of a transplant. Never have I experienced such elation with this gift of life. We were so fortunate to have Pam with us for almost four more years. Pam was able to experience so much during that time — she was able to spend time with her family, friends, beloved dog Bess, and meet her new great niece and nephew. She enjoyed her garden, nature, sunsets, holidays, and voted in the 2020 election.
Unfortunately, lung transplants are complex and over 50% of patients experience chronic rejection which compromises the outcome of the lung transplant. In memory of Pam and in honor of her valiant fight to make the most of her time here on earth, our family has established the Pamela A. Hurley ILD Innovation Fund with the goal of improving outcomes for patients receiving lung transplants. Through the Pamela A. Hurley ILD Innovation Fund a unified patient registry and biorepository from transplant recipients with ILD and other diseases is being created. This biorepository will integrate with and complement the existing Herlihy ILD Registry, and facilitate the development of a registry that stretches across the continuum of care for ILD patients at the Brigham. Bio-samples will fuel a range of studies, enabling Dr. Goldberg and her team to generate the preliminary data needed to apply for large grants from the National Institutes of Health (NIH), as well as foundations and other funding sources. To date, the ILD Registry has provided the foundation for a research portfolio in ILD encompassing more than $15 million in funded studies. Expanding the biorepository to include the advanced lung disease/transplant population is expected to follow in these highly successful footsteps.
Pam dedicated her life to improve the lives of others through her work in Rehabilitation Counseling. Please join Pam’s family in continuing her legacy in hopes of improving the lives of others as they face the challenges of transplants by making a contribution. Every dollar will make a difference.
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