Bio
In 1998 I was a professor in the Community Health Department at Tufts University. For fun and exercise I joined some of the students in an Indian dance class. I found myself getting extremely short of breath and unable to keep up with the other dancers, which I attributed both to my age and my “adult-onset asthma”. As soon as possible I visited my pulmonologist hoping to see what treatment options were available. The allergist on the care team opined that I didn’t have asthma, but Alpha-1 Antitrypsin Deficiency (AATD) and he wanted me to test for it. Then believing that AATD was a very rare condition I scoffed at the idea of testing, but I agreed- and he was right—my symptoms were being caused by AATD. From that day forward I devoted myself to staying as healthy as possible. I became involved with AATD and related patient organizations. Whenever I was able, I incorporated information about lung diseases and transplantation into the courses I taught such as medical and public health ethics, research methodology, introduction to pathology, etc. In 2000 I attended a national AATD educational conference where I met a man who was on the lung transplant list. He received his transplant in 2001. Through his experiences pre- and post I learned a lot about transplant processes and caregiving. In 2015 we were living in Tennessee, and I was retired from academia. I went on the transplant list and in 2017 underwent a single lung transplant. My husband had been my caregiver though out my transplant journey. I remained active in voluntary positions until my husband died in 2021 (of causes unrelated to his transplant). I decided to return to the workforce part-time in the Epidemiology Department at Vanderbilt University Medical Center; and in 2023 I took on a full-time position as a disease management coordinator for AlphaNet, Inc., a 501c3 organization focusing exclusively on promoting the health of individuals with AATD. One of the things I enjoy best about my job is helping patients who are thinking about or waiting for a lung transplant. I am constantly reminded of their transplant-related concerns and challenges. I hope that I will be able to give voice to some of their issues in my role on the TCAC.
Advocacy Experiences
Over the years I have been professionally and personally involved in numerous advocacy initiatives focusing on a range of health issues. Most of my advocacy efforts have been related to pulmonary health and/or organ transplantation. In the late 1970s I served as a member of the Board of Health of Skokie Illinois. I am most proud of my helping develop and promote the village’s first indoor clean air act which restricted smoking in most indoor public places throughout the village. At that time, I also volunteered with the Chicago Chapter of the American Lung Association. I have continued my affiliation with this organization and most recently joined the American Lung Association for Respiratory Advocacy Day 2025 urging members of Congress to co-sponsor the 2025 Supplemental Oxygen Reform Act (HR 2902). In 1986 I joined the American Public Health Association and have since served in numerous leadership and policymaking roles including membership on the Governing Council, Education Board, and as a founding member of the HIV/AIDS Section. Since my own diagnosis with Alpha-1 Antitrypsin Deficiency (AATD) I became involved in many efforts to promote the health and welfare of people with AATD such as serving for eighteen years on the Board of Directors of AlphaNet, Inc., as well as advocating for the passage of the Genetic Information Non-Discrimination Act (passed in 2008). After my lung transplant in 2017 I became a volunteer Ambassador for Tennessee Donor Services in which capacity I raise awareness of transplant issues and promote education and donation to community groups throughout the state.
Advocacy Interests
As a member of the TCAC I want to focus on various ethical aspects of donation such as advancing equity in organ allocation, promoting donation while protecting donors’ and would-be donors’ rights, helping pre- and post- transplant patients navigate the healthcare system and improving access to care and psychosocial support. I am also interested in promoting the development of the safest and most effective immunosuppressive drugs and treatments.
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