Faced with this devastating disease, LAM women and their families from around the world are taking action by raising money for The LAM Treatment Alliance. These women recognize the LTA's unique fast-track approach to research can deliver an effective treatment within four years – but only with sufficient funding. So they are mobilizing their families, friends, and professional networks to raise money and awareness to save their lives. A sampling of their stories follows.

Dr. Havi Hannah Carel, 35
Philosophy Professor
Bristol, UK

"I want to control my illness, not let it control me. This means trying to change medical reality by working with the LTA."

Driving back from the city center my father said, "I'll swing by the medical center to collect your CT results." My mum and I waited in the car. Ten, fifteen, then twenty minutes passed, so I went to see what was wrong. Entering the dimly lit office, I saw the radiologist showing my father something on the computer screen: a grey circle, rimmed with a white band filled with small black balls.

The radiologist looked up, surprised and displeased to see me. "Do you know what's going on?" he asked. When I said no, he smiled awkwardly and handed me a diagnostic manual. He pointed to a word I'd never seen: Lymphangioleiomyomatosis. When I asked what it was, he simply pointed to the text and said, "Read about what you've got."

Words swam on the page: bullae, pneumathorax, chylous effusion. I skimmed further down. Prognosis: 10 years from onset of severe respiratory symptoms. That would make me 45. Time slowed until it came to a full stop, suspending me in mid-air. Ten years. I sat motionless as the radiologist continued to talk. I stared at him. He ignored me. Eventually I said the only thing that came to mind: "Can someone get my mother?"

My initial reaction was to avoid the Internet, to avoid reading anything about LAM. What for? I'd be dead in 10 years. My brother scouted the Web and slowly I let new information in. The ten-year figure had been surpassed. There are organizations that offer support and information. A drug that might slow the progression is in clinical trial. After a few days, I worked up the courage to research LAM myself. Information, I began to realize, leads to confidence, to a sense of control.

Eight months since my diagnosis I am no longer afraid of knowing. I understand how important it is for patients to know the enemy so they can fight it with all they've got. I continue my work as a philosophy professor at the University of the West of England as before. But now I focus my research on the phenomenology of illness, showing how defining illness merely as a bodily dysfunction is partial and flawed.

Ironically, just a month before my diagnosis, I published my first book, Life and Death in Freud and Heidegger. In a discussion of the metaphysical relationship between life and death, I argue that the two are intimately linked. My thoughts on death were reinforced by my diagnosis. My view, that loss and finitude are important elements in life, and that death is only one kind of finitude among others, remains intact. Philosophy has given me a capacity for contemplation, for reflective distance, which helps me in my everyday life with LAM.

I know that my life will never be the same. The slow deterioration of my breathing is shrinking my world. Stairs and hills are insurmountable, and I am gradually giving up football, running and hiking – activities that are my daily bread. I have to face the knowledge that I will never bear children, the fear of becoming increasingly disabled, and thoughts about death and the arbitrariness of being struck by LAM. But I have to fight.

I joined forces with the LAM Treatment Alliance because I share Amy Farber's sense of urgency and desire to live well with LAM. Her vision of fast-tracked targeted research, coupled with her determination to broaden the circle of researchers working on the disease has spurred me to action. I devote a few hours each day to helping the LTA organize events; I contact researchers and communicate with other patient organizations. I want – more than anything in this world – to contribute to finding an effective treatment that will slow the progression of this devastating disease.

Anne Hall Levine, 46
Musician, producer
Cape Cod, Mass., Florida

"Though I could no longer sing on stage or in a studio, I had found another place for my voice."

Three years ago I was living a fast and colorful life in New York. I spent my days managing and producing rock bands, my nights in clubs supporting my performers and scouting new talent. My loft held rehearsals daily, including my own as I laid down vocals for my first CD. My life was full of energy and music.

One Friday afternoon, I became severely short of breath after walking only two blocks. I returned home and cancelled my studio session. When it happened again the next day, I called my doctor. Concerned that I might have SARS, she sent me to the emergency room. As rarely happens with LAM, I received my diagnosis within one week. Rarer still was I had known a woman with LAM who had died two years earlier in the same hospital – just six months after her diagnosis. I was besieged with heartbreak and terror.

Knowing there was no treatment for LAM, I resigned myself to my seven-year prognosis. Though I searched, I could find no doctor or institution that could give me hope.

My health failed rapidly, so I moved back with my family. I left New York, my friends, my music – my whole world behind me. For three years, I waited to die. In March 2006, I suffered three consecutive pneumothoraces (lung collapses). When two chest tubes failed to reinflate my lung, I was told I needed a thoracotemy to remove the weak areas of tissue, followed by a pleurodesis to glue my lung to my chest wall. Such extreme surgical interventions are simply how LAM is managed, I found. Women have had them multiple times on each lung.

During my recovery, I began blogging about life with LAM. I named andiwillsing after the Shakespeare line from A Midsummer Night's Dream. Although I could no longer sing on stage or in a studio, I had found another place for my voice. Other women with LAM began reading my posts and writing me.

One day something extraordinary happened. A LAM patient forwarded me story from The Wall Street Journal about Amy Farber and the LAM Treatment Alliance. After researching the LTA I felt a rush of excitement. There were doctors, researchers and scientists working on finding an effective treatment.

In short order I contacted Amy. Galvanized by her passion and commitment to LAM research, my family and I quickly raised more than $100,000 for LTA research projects. Today, we continue to raise money through letter-writing campaigns, and in 2007, we'll hold a fundraising event in Florida that will bring together LAM clinicians and researchers with potential donors.

Still writing, my essays are now imbued with a new spirit born of knowing that the LTA is working tirelessly for all women with LAM. I urge you and your families and friends to join us. The speed at which the LTA finds an effective treatment is limited only by your passion and generosity. Please donate your time, money and resources to help reach our goal.

Monique Coles, Age 36
Biologist, mother of two
Indianapolis, Indiana

"Chad and I had built the perfect life when LAM came along and changed everything."

When I finally met the man I'd spend the rest of my life with, I was nearly 30. So when Chad and I married, I was eager to quit work in a research lab and start a family. Our son Mason was born after an easy pregnancy, then our daughter Indy came quickly after a much tougher one. Before we knew it, Chad and I had ourselves a pair of blonde Gerber babies, so cute they won second prize in a photo contest for Francisco Rinaldi spaghetti sauce.

Since I was young, I had a lot of back pain from a rare condition called Scheuermann's disease. So after the babies were born, I had an MRI. Something showed up that concerned my doctor, so he sent me to a general surgeon, who then sent me for a CT scan. The surgeon found an abdominal cyst that stumped him. He said I'd probably had it for a long time and that we'd monitor it with regular scans.

Early one morning I woke with the worst stomach pain of my life. Chad called 911 and went to the hospital in an ambulance. The staff gave me morphine and sent me home, saying my abdominal cyst had bled and to follow up with my surgeon. But the radiologist had a hunch that I might have LAM. My surgeon's knowledge of LAM consisted of what he'd read online before my next office visit. He then sent me to a pulmonologist – one who'd never even heard of it.

Ironically, I was so relieved that I didn't need surgery that I sent Chad off to work. When I got home, I innocently looked up LAM online. Seeing the life expectancy made me woozy, then angry. This is no way to learn you have a disease that will take your life! I cried for days. I would never see my children grow up. Worse, I would leave them without a mother.

My sister January came with us to see the pulmonologist. He looked at my CT scan and the results from three breathing tests and said, "Yep, you've got it." January asked, "What would you do if this was your mother or sister?" But he refused to answer. He was cold, treating me, his first LAM patient, like some new-found specimen. He did throw in, "By the way, you shouldn't get pregnant again."

Chad and I were stunned both by his words and manner. My sister was able to ask, "What should we do?

"There's nothing you can do," he said. "Just go home and we'll schedule another CT scan to watch the progression."

But of course there's something we can do! We can raise money for LAM research and find a cure!

When my family and I found the LAM Treatment Alliance, we connected with Amy Farber easily. She knows better than anyone that time is something we don't have. This year, we won't be exchanging Christmas gifts, but instead we will donate the money to the LTA. January is hard at work setting up an LTA chapter here in Indianapolis. We're gearing up to run fundraisers locally and my brother David is seeking pledges and grants from his home in Los Angeles. We're all working hard to help the LTA find a treatment soon. Please join us.