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The Future of Monitoring Lung Function in LAM

Posted on May 07, 2021   |   

As all LAM patients are well aware of, serial lung function testing performed in a physician’s office is the current standard of care to assess the disease status for LAM patients. A full set of lung function tests comprises of the following:

1) Spirometry: measures the maximum amount of air you can exhale in the first one-second, known as forced expiratory volume in one-second (FEV1), and the total amount of air you can exhale, known

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Topics: Home Spirometry        Categories: Educational Resources

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Articles for category Educational Resources

Q&A: The MILED Trial

Posted on September 25, 2018   |   

Published 9/25/2018

The MILED Trial is a currently enrolling study led by Dr. Frank McCormack, Scientific Director of The LAM Foundation. The trial seeks to answer an important clinical question about early treatment of LAM. That question is: “Does early treatment of mild LAM symptoms with low dose sirolimus stop progression of disease and cyst formation in the lungs?” The answer to this question will benefit patients with LAM all around the world.

Here, we answer your own questions about the MILED Trial. 

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Topics: clinical trial Dr. Frank McCormack MILED Sirolimus        Categories: Educational Resources
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Single Cell RNA Sequencing Allows Comprehensive Study of the Genetic Programs of All Cell Types in a Diseased Human Lung

Posted on July 23, 2018   |   

Studying LAM biological behavior in the laboratory is difficult because the model-based approaches that have been so vital to progress in other diseases have simply not been very good in LAM. There are many reasons for the inadequacy of LAM cell models, including that we don’t know the origin of the LAM cell, and that LAM cells grow slowly, change their signature functions with time in a dish, are often outcompeted by other cells in culture, and do not survive well through multiple passages. Immortalizing LAM cells with viruses can keep them alive but alters them in unpredictable and inauthentic ways. LAM animal models are also problematic; there is no known naturally occurring model of LAM other than in humans, and because we don’t know where LAM starts in the body, we don’t know what cell to target with our genetic manipulations.

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Topics: Single Cell Analysis        Categories: Educational Resources

A Phase II Clinical Trial of an Aromatase Inhibitor for Postmenopausal Women with LAM

Posted on November 21, 2017   |   

Lymphangioleiomyomatosis (LAM) predominantly affects women and can worsen with pregnancy, estrogen treatment, and the menstrual cycle, which suggested an important role for estrogen in the development and progression of this disease.

In preclinical laboratory studies, estrogen appeared to promote the growth and spread of LAM-like cells, while suppression of estrogen reduced the survival of LAM cells. In other human clinical trials, there has been a suggestion that lung function declines more slowly in LAM patients after menopause, although this was not clear when this clinical trial was being developed.

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Topics: Research        Categories: Educational Resources

Management of Pneumothorax – What is the Best Strategy?

Posted on November 21, 2017   |   

Pneumothorax (collapsed lung from accumulation of air between the lung and the chest wall) is a significant problem in patients with LAM. Up to 70% of patients will ultimately develop at least one pneumothorax in their lifetime and this is often the first sign of LAM. Most commonly, the pneumothorax occurs spontaneously without inciting factors (such as vigorous exertion). Unlike patients with Primary Spontaneous Pneumothorax (which occurs in patients without apparent underlying lung disease) who have about a 25% risk of recurrent pneumothorax after a first episode, three-quarters of women with LAM suffer from recurrence if nothing is done to prevent it. In a survey conducted from The LAM Foundation database, participants reported an average of 3.5 episodes of pneumothorax resulting in an average of one month total spent in the hospital.

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Topics: pneumothorax        Categories: Educational Resources

Pulmonary Lymphangioleiomyomatosis (LAM): A Monogenic Neoplasm That Provides a Window into Cancer

Posted on November 21, 2017   |   

The LAM community including LAM researchers, clinicians and patients has made incredible progress over the last 20 years. Frank McCormack and I were honored to write an invited review article “Lymphangioleiomyomatosis: A Monogenic Model of Malignancy” for the prestigious The Annual Review of Medicine, which covers significant developments in various fields of medicine since 1950.

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Topics: Research        Categories: Educational Resources
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