My name is Amy Farber. I am 36 and not ready to die.

"LAM is a devastating disease. I am coping through action."

Diagnosis with LAM

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).

Finding the Bigger Picture

I want to live. I'm not ready to die. 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 is the basis of our approach to finding an effective treatment for LAM.

LAM Treatment Alliance's (LTA's) Mission and Approach

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's mission is to overcome barriers to treatment research and bring new best and the brightest experts to the table. Specifically:

Mobilizing Expertise. Bringing researchers and clinicians across disciplines together through:

• Ad hoc meetings
• Monthly research trusts at Harvard Medical School
• International bi-annual invite-only state-of-the-science Summits
• Fostering and funding critical collaborations / partnerships

Connecting Patients and Researchers. Clinical care that stays on the cutting edge of research developments.

• Patient contact
• Disease management
• Global patient data network

Eliminating Barriers. Prioritizing work to overcome key barriers to accelerating treatment research.

• Ensuring fast and effective tissue procurement, banking, distribution
• Cell isolation, culturing, cell line
• Animal Model development

Fast-Tracking Core Research. Accessing leading-edge expertise and technologies to foster and directly or indirectly fund collaborations through investments of $75-$250,000 per year, per project in the following areas:

• Biomarkers
• Genotyping / expression analyses
• High-throughput combination drug screening

Join us!

LTA has raised more than $900,000 for LAM research thus far. Despite this generous outpouring of support, our biggest challenge continues to be funding the research. 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!

Thank you.

Onward!!!