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Alyssa Ciano is a high school student from Senora, California who came up with a creative way to raise money for LAM: A spaghetti dinner! Here, she shares how she became involved with The LAM Foundation, why she chose to fundraise, and what made her event successful.
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Fundraising
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Events
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I’m not saying this is the easiest thing to do. I’m just taking it one day at a time. Embracing the LAM community has also been a huge help to me. Connecting with other women who have this disease has given me the security that I’m not alone in this fight. I will do my best to bring awareness to this disease.
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A resource offered by The LAM Foundation, the Circle of Hope Transplant Support Program was established in 2018. The program connects LAM patients who are considering lung transplantation with those who have undergone the procedure, as well as with experts in the field.
Program Coordinator Sharlene Dunn shares her own journey to transplantation, the story behind the Circle of Hope, and the many inspirations she has found along the way.
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In August 2018, Rachel Faleide, MSN, FNP-C was diagnosed with LAM. In September 2018, she decided to share her diagnosis with friends and family by starting a Facebook fundraiser for The LAM Foundation. Rachel’s initial goal was to raise $500. In just weeks, she smashed that goal by raising over $5,000! Here, she shares the story behind her fundraising success.
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With your support, The LAM Foundation continues to thrive as a source of hope for individuals affected by LAM. We have again accelerated research and improved patient care, with each day moving us closer to a cure. Learn more about a few of our 2018 accomplishments.
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Are you or someone you know over the age of 70 ½ and looking for more ways to give to The LAM Foundation? You may be able to donate through a Qualified Charitable Distribution! Read on to learn more about this opportunity to give.
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How can we improve the lives of LAM patients in five years or less? This is the question scientists, clinicians, and patients themselves gathered to answer at the first-ever LAM Patient Benefit Conference. Among the many valuable ideas shared, the following grant proposals have received funding to move forward. Each was chosen for its potential to result in solutions that will positively impact the diagnosis, care, or quality of life of LAM patients by the year 2023.
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Kat Steele is a LAM patient who commemorated the 5-year anniversary of her diagnosis by participating in the New Hampshire Marathon on September 29, 2018. Here, she shares insights from her journey as a LAM patient, as a runner, and as a fundraiser.
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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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News
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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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