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Articles for category Events

Why We Ride: Million Dollar Bike Ride

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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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Categories: Events

HOPE 2.0

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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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Tags: Patient Benefit Conference
Categories: Events

Lobbying for LAM

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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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Tags: Advocacy Capitol Hill
Categories: Events

What is the Patient Benefit Conference?

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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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Tags: Patient Benefit
Categories: Events

LAMposium DC or LAMposium LA…or Both!

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Can't decide whether to attend LAMposium DC, LAMposium LA or both?  Keep reading to learn about highlights for each conference and more information to help you make your decision. 

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Tags: LAMposium DC LAMposium LA
Categories: Events

Guest Blog: A 90’s Prom Fundraiser

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My biggest fear when I was growing up (other than sharks of course) was always that I would grow up and be ordinary. For as long as I can remember, something in my gut always told me that I was destined to do something unique and amazing. Little did I know that I would, in fact, become extraordinary, just not for the reasons I wanted. 

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Tags: Fundraising
Categories: Events

What I Learned on Capitol Hill

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I learned a lot of great lessons during my time ‘on the Hill’. I learned that my congressional representatives want to hear from their constituents about what matters to them. I learned that even though they may not understand what LAM is, they want to learn and want to help. And I learned that if you are visiting your representatives on the Hill, you should DEFINITELY wear comfortable shoes.

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Tags: LAM Day on Capitol Hill LAMposium DC
Categories: Events

LAM & TSC Patient-Focused Drug Development Meeting with the FDA

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The TS Alliance, in partnership with The LAM Foundation, is sponsoring a Patient-Focused Drug Development Meeting (PFDD) with the FDA on June 21, 2017, at the Hyatt Regency on Capitol Hill in Washington, DC, from 8:30 a.m. to 4:30 p.m. The purpose of this meeting is for individuals affected by LAM and TSC and caregivers of dependent adults or children to communicate their perspectives on living with LAM and TSC to the FDA. This meeting is free and open to the public, and it will be webcast live online. We hope you will REGISTER and make plans to attend in person or online.

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Tags: LAMposium DC PFDD
Categories: Events

LAMposium Means Hope

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After several months of suffering from shortness of breath, I asked a friend of mine, who is a doctor, what he thought I should do. He told me to get a chest X-ray; that is when I started to worry because my X-rays revealed that something was wrong with my lungs. He referred me to a specialist and told me to get a CT scan before going to the specialist’s office. On August 3, I was diagnosed with this rare disease I could not even pronounce: lymphangioleiomyomatosis – LAM. My pulmonologist explained what he knew about the disease and of course I was devastated.

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Tags: LAMposium 2016
Categories: Events

If You Could Ask an Expert to Solve Your Most Vexing Issue with LAM, What Would it Be?

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The obvious answer to this question is: a cure. A cure would negate every other complication caused by LAM. Indeed, finding a cure remains our number one priority at The LAM Foundation. However, in the intervening years, we know there are many questions and issues that, if solved or addressed constructively, might improve each patient’s quality of life as we endeavor to overcome the final barriers to a cure.

What would make life better for you now: hour to hour, day to day, month to month, clinic visit to clinic visit? The answers you provide to this question will set the agenda and priorities for the upcoming “Patient Benefit” Research Conference, to be held concurrently with LAMposium LA.

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Tags: LAMposium LA Patient Benefit
Categories: Events

Have Bike, Will Ride for LAM

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Katherine Lu Hsu, talks about her experience at the UPENN Million Dollar Bike Ride (MDBR) and why the MDBR community and supporting The LAM Foundation are so important to her. 

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Tags: Fundraising
Categories: Events

Houston Education Gathering

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LAM Liaison, Kathi Hawn, was so excited to share her LAMposium experience with women in her region, she hosted a gathering in her home, just two weeks after the conference. And she invited some very important women who came to present on new LAM research that came from the RLDC•2016•LAMposium. LAM Clinic Director, Rosa M. Estrada-Y-Martin, MD, MSc, from the University of Texas Health Center and Caryn Pope, SLAM trial research coordinator from Baylor University were there to meet with everyone.

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Tags: Education Events
Categories: Events

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