In this day and age with the amount of research and medical knowledge that we have, unfortunately it's all to often that we hear of a rare and fatal disease with no cure.

That is the case with Lymphangioleiomyomatosis, more commonly referred to as LAM. It is a rare lung disease that affects almost exclusively women of childbearing age and it is characterized by an unusual type of cell that invades the tissue of the lungs, including the airways, and blood and lymph vessels and can also affect the kidneys. Over time, these misregulated cells form into bundles and grow into the walls of the airways, and blood and lymph vessels and kidneys causing them to become obstructed, according to medical research.

Although these cells are not considered cancerous, they grow without the usual controls within the lungs, the lymphatic system and kidneys. In the lungs, over time, the destruction of healthy lung tissue can prevent normal oxygen exchange, preventing the lungs from providing oxygen to the rest of the body and creating what some physicians call "air hunger," according to medical research.

There is no strong statistical data supporting the number of patients with LAM, as it is often misdiagnosed. Symptoms include shortness of breath, chest pains and a collapsed lung and it is often misdiagnosed as bronchitis, asthma or emphysema. A high-resolution CT Scan or tissue biopsy is required to identify the disease.

Many doctors who treat LAM patients caution them against having children as pregnancy is thought to accelerate the disease. Because the disease affects women, scientists believe that it is hormonally related.

At this time, there is no effective treatment, but awareness and the acceleration of research are very important. Amy Farber was newly married and looking forward to starting a family and that all came to a screeching halt when she was diagnosed with LAM in April 2005. She took a proactive approach to her diagnosis and founded the LAM Treatment Alliance (LTA), headquartered in Boston.

LTA's mission is to find a treatment for LAM in the fastest time possible by supporting an aggressively funded high-impact research strategy. The highest priority research projects are matched with researchers, labs and institutions best equipped to carry out that work. LTA recruits scientists, facilitates research collaborations and invites and accepts scientific proposals on a rolling basis.

"Our organization is committed to facilitating high-quality and high-impact LAM research through funding scientific awards, supporting increased dialogue and collaboration among LAM researchers and leaders in relevant fields and across disciplines and institutions. As an organization entirely dedicated to supporting the work of moving LAM science forward, our goal is to stay lean without sacrificing the quality of research or the integrity of the scientific process. We are committed to keeping the science cumulative and thus partnering with other foundations and institutions where doing so supports our mission of ensuring that funds generated in the name of research have greatest aggregate impact," according to LTA's mission.

According to Farber, gaining information on LAM can help researchers understand other diseases. "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."

Raising awareness and funds is very important and every little bit helps, according to Farber, and volunteering opportunities do exist. Farber suggests a letter-writing campaign in conjunction with LTA - those interested would mail letters to family and friends to educate them about the disease and LTA provides the mailing and the stamps. Fundraising events can also be organized with LTA support.

For LAM patients, there is a privacy-protected database available to share patient information with researchers throughout the world, according to Farber. More information is available at www.LAMTreatmentAlliance.org.

"I have learned so much from women with this disease," said Farber. "It affects women directly but it is impossible to say that is doesn't affect the lives of the men who love them. This is a community disease - it takes a community to do something about it."

Although LTA is headquartered in Boston, there are other chapters throughout the United States including one in New York. Visit www.LAMTreatmentAlliance.org for more information or to make a donation. If you are interested in volunteering, e-mail LTANEWYORK@lamtreatmentalliance.org or Info@LAMTreatmentAlliance.org.