By the end of 2004, my husband Michael and I were nearing the end of long medical-related academic training careers and wanted to start a family. I had always been active and healthy, but vague back pain and some upper abdomen discomfort worried me. After months of tests and profound uncertainty, I was diagnosed with LAM by the intelligent and caring staff at the National Institutes of Health.
Suddenly, Michael and I could no longer talk about children in the same way or growing old side by side.
In April 2005, I left the NIH with my diagnosis, a supply of multivitamins and a warning that carrying a child myself might accelerate the disease. The diagnosis is devastating, but I am coping through action. That's why - with the help of scientists, researchers, institutions, community members, family, friends, other patients and their families - so many other dear supporters - together, we founded the LAM Treatment Alliance (LTA).
Even as my own disease progresses, it is clear that there is still time to slow or stop it in its tracks. This animates my work in the most daily way! The fact that there are "bigger picture" gains from investing in LAM research helps me to experience greater satisfaction in the work that we are mobilizing and the traction we have already achieved. This bigger picture, combined with another - the fact that over 25 million Americans suffer from one of 6000 rare diseases - helps me to enfold my past advocacy work into my new mission.
LAM is caused by a defect in a cellular pathway that regulates cell growth and has been implicated in many forms of cancer - breast cancer, prostate cancer, melanoma - as well as tuberous sclerosis and diabetes. Scientists believe that advancing understanding of LAM will also benefit cancer patients and help inform other common diseases; conversely, by studying more common diseases and treatments, scientists believe they can achieve a major breakthrough with LAM. This has been the basis of our approach to finding an effective treatment for LAM from the start.
LTA's mission is to accelerate LAM treatment research to help patients living with the disease today. LTA's exclusive goal is to find an effective treatment in the fastest time possible. LTA has raised more than $1.2M for LAM research thus far. Despite this generous outpouring of support, one of our biggest challenges continues to be funding research most aggressively. The good news is that we are idea-rich! You play a pivotal role in this process. Together we can make medical history. The faster we move, the faster we can find an effective treatment.
Please join us in saving lives and making medical history!
Amy Farber, PhD, is the Founder and Chief Executive Officer of the LAM Treatment Alliance (LTA), a 501(c)(3) non-profit organization. After being diagnosed with LAM in April 2005, Dr. Farber founded the LTA with the goal of fast-tracking bench-to-bedside research to find a treatment for LAM in time for women now living with the disease. She is trained as a social scientist focused on the study of law, medicine and society and received her BA from UC Berkeley and PhD from Harvard University. She has completed a Fellowship in Medical Ethics at Harvard Medical School and is a member of the Harvard Medical School faculty and the Institutional Review Boards of Brigham and Women's Hospital and Massachusetts General Hospital in Boston. Dr. Farber lives in Cambridge, MA with her husband, Michael Nurok, and daughter, Charlotte.