My name is Amy Farber. I am 35 and not ready to die.
Last December, my husband Michael and I were nearing the end of our extensive academic training. I had finished a PhD in Social Anthropology and half of law school. Michael was nearing the end of his residency in Anesthesia at Brigham and Women's Hospital at Harvard in Boston and finishing his PhD in Sociology. We wanted to start a family. I have always been active and healthy, but I had a vague pain in my back and felt especially tired. I wanted to be sure I was healthy for pregnancy. After months of testing and profound uncertainty, I received a diagnosis of lymphangioleiomyomatosis (LAM) at the National Institutes of Health last April. Suddenly, Michael and I could no longer talk about building a family and growing old side by side.
I have LAM
LAM is a fatal disease that affects women during their childbearing years. LAM is thought to target women even more uniformly than either Breast Cancer or Lupus. It is just as fatal. In LAM, aberrant circulating smooth muscle cells destroy normal lung tissue through the development of cysts. We don’t know how many women have LAM. Many physicians have never heard of the disease, and it requires a CT scan and sometimes a biopsy for diagnosis. On average, LAM goes undiagnosed or misdiagnosed as asthma, bronchitis or emphysema for four years. LAM is especially cruel in that women are often diagnosed during pregnancy and learn that they may not live to see their children grow up. There is currently no effective treatment.
My goal is to be well
I left the NIH with my diagnosis of LAM, a supply of multivitamins and a recommendation to think hard before getting pregnant because it might accelerate the disease. As in the past, I am coping through action. The diagnosis and its implications were devastating but I had to save my own life. For the past 15 years I have committed my life to advancing civil rights and social justice both in the United States and South Africa. I have lived my life as an activist and a voice for people in need, recently focusing on improving access to basic health care for impoverished groups in the United States and abroad. I drew on all of my experience and the sum total of my skills in order to launch a fight against LAM.
Here is my plan
I began by learning everything I could about LAM and related diseases, and then Michael and I launched a multi-pronged attack against LAM, my goal being to find an effective treatment and ultimately a cure. Since my diagnosis, I have learned much about the dearth of attention paid to fatal women's diseases with no treatments. I have learned a great deal about rare diseases, which number over 6,000 and affect more than 25 million Americans, or 1 in 10.
With the support of family and friends, I have managed to have LAM included in U.S. Senate appropriations language in an effort to increase funding for research. I have met with legislators and lobbyists to advocate for increased funding for fatal women's diseases without treatment. My family and friends raised more than $210,000 for LAM research in three months through a personal letter-writing campaign.
We are now embarking on a new phase of this journey, with opportunities possible only here in Boston, where Michael and I live. In early December, we are convening a meeting of 10 internationally acclaimed scientists. Half of these scientists are leaders in LAM research, and the other half are widely recognized as leaders in developing effective treatments for disease. The team comes from America’s most elite institutions, and their aim is to define and prioritize a set of research projects, which will lead to finding a treatment for LAM in the shortest possible time.
In a complementary stream of work, we have been organizing a monthly seminar series at Harvard Medical School. The goal of the seminar series is to provide a forum for Boston-based researchers in disciplines relevant to LAM for collaboration, presentation of new data and identification of novel therapeutic approaches and gaps in research that might shape a future research agenda.
Our third stream of work involves mobilizing the vital resources to fund the research projects most likely to yield a treatment for LAM in the shortest time. The opportunity to have a dream team of scientists apply their minds to LAM is priceless, but fast-tracking this research process requires funds. We have just enough money to pay for the December summit. We have been told that work on the highest priority project to emerge from this meeting could begin in early in the new year if we can raise the funds to support a full-time post-doctoral researcher and laboratory materials using the latest technology.
I need your help
LAM provides a unique opportunity for research. It is well understood at a molecular and cellular level. It lies at the intersection of pathways involved in more common yet serious diseases including tuberous sclerosis, prostate cancer, breast cancer and atherosclerosis. Finding a treatment for LAM will also promote understanding and treatment for these diseases. Solving multiple disorders that involve a common pathway requires a multidisciplinary systems biology approach, bringing together laboratory and clinical researchers interested in cell signaling, estrogen biology, pulmonary pathophysiology, vascular biology, and cancer, among other disciplines. Such an approach is directly in keeping with the dream team’s composition, the thinking behind our seminar series and the multidisciplinary perspective outlined by the NIH Roadmap for Medical Research as a guiding principal for research funding and support. (http://nihroadmap.nih.gov/). It is also the way in which I, as someone fighting on behalf of marginalized groups of people in the past, have had success in bringing about significant lasting positive change.
Our key challenge is money. Given our strategic successes and in light of the challenges ahead, we are founding a nonprofit organization to accelerate the pace of LAM research through expert-directed, multidisciplinary translational research. By December, experts will have mapped out a list of research priorities and the sooner that these can be funded, the faster a treatment for LAM will be developed.
We need your help.
To donate to the LAM Research Fast Track Fund, you can send a check payable to the “Boston Foundation/LAM Research Fast Track Fund” c/o Boston Foundation, 75 Arlington Street, Boston, MA 02116 or make a tax-deductible donation online at: www.CommunityRoom.net. Click “Make a Donation.” Next, scroll down to the blue “Nonprofit” bar and “select a nonprofit”: “Boston Foundation, Inc.” Under the blue “Special Instructions” bar below, be sure to type in: “LAM Research Fast Track Fund.”
There is little government or corporate funding being directed to LAM research, so we must find this funding within the network of LAM patients’ families, friends, and communities. The LAM Research Fast Track Fund at the Boston Foundation was created to accelerate the pace of promising LAM research. Funds will support scientific research and collaborative and interdisciplinary work among scientists to develop effective therapeutic options or cures for LAM. Funds are being raised on behalf of the Boston Foundation for this component fund.
» Boston LAM/TSC Seminar Series