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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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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From the start, Kristy and I committed ourselves to giving all we could to support The LAM Foundation’s research. But after a couple of years I realized there is only so much that one family can do alone. So, I decided I was going to have a “fund-raiser”.

I had heard many of the success stories about patients, their families and friends having fund-raisers. But, even though I have always enjoyed giving to other people, the idea of asking for money for myself (or even for my family) makes me uncomfortable. I know that a lot of people probably feel this way, but this just was too important to let those feelings deter me.

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Registration for the Patient Benefit Research Conference is officially open! The LAM Foundation staff is super excited about this conference, but we also realize the concept may still be unclear to many who might want to attend. I wanted to take a few minutes to help provide a better understanding of what it is and what you might learn by attending.

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Since our time on Capitol Hill in late June, there has been much happening around the 2018 congressional budget. Below is the latest regarding NIH funding and information about how you can continue to help ensure this important funding is sustained in the 2018 budget.

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