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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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"The LAM community should be incredibly proud of the Foundation’s continuing role in fast-tracking the best LAM research” – Elizabeth Henske, MD
We need your help to fund LAM research. The LAM Foundation is the global leader in the fight against lymphangioleiomyomatosis (LAM). We are dedicated to finding safe and effective treatments, and ultimately a cure, for women living with LAM. By donating today, you can help give “A Breath of Hope” to women with LAM across the globe. 100% of your gift will go directly to LAM research.
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LAM Research
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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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Joe & Mary Van Brackel share a bit about their experience participating in the Million Dollar Bike Ride sponsored by the Penn Medicine Orphan Disease Center.
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CEO, Sue Sherman talks about the significance of the recent Patient Benefit Conference and how The LAM Foundation is embarking on HOPE 2.0.
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With your support, The LAM Foundation continues to grow and be both a champion and innovator for LAM patients and their families. 2017 was once again a busy year at The LAM Foundation, as we continue to accelerate research and to improve patient care.
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2017
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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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We often hear about the power of lobbyists/advocates and their ability to take on a specific cause with the goal of influencing change. But when The LAM Foundation decided to gather a group of LAM patients, family and friends in Washington, D.C. to advocate for LAM awareness and the need for continued funding of the NIH, it presented an opportunity almost as rare as the disease itself.
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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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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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In early July, LAM Patient, Linda Grunberg received a much-anticipated call from the lung transplant program at the Hospital of the University of Pennsylvania (HUP), that it was her turn to receive new lungs. After living with LAM for nearly 20 years, she was certainly ready, “As a LAM patient, I've been coming to HUP for 19 years and had the utmost confidence that this would be the best place to have my transplant.”
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Global Genes Summit
Development Manager, Katie Jensen recently traveled to the Global Genes Rare Patient Advocacy Summit to learn from and collaborate with other rare disease leaders. Read about what she learned, who she met, and why she’s even more inspired for the Patient Benefit Conference & LAMposium LA!
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