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Check out all the presentations from LAMposium DC.
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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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The New Zealand LAM Charitable Trust was founded in 1999 by Bronwyn Gray and communicates with nearly 20 women with LAM. The home office is located in Auckland, New Zealand with one full-time employee, a voluntary coordinator and fundraiser and an eight member voluntary trustee group. The LAM Charitable Trust works closely with Scientific Advisor, Professor Merv Merrilees and Medical Advisors, Professor John Kolbe from the University of Auckland along with Dr. Christine Forster.
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LAM-Netherlands was founded in 2010 by Ine van Meijeren and communicates with 60 women with LAM. The headquarters for LAM-Netherlands is in Wijk and Aalburg. The organization is run by four volunteers, when needed, they ask for help from local women with LAM and their families.
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FLAM Association (France Lymphangioléiomyomatose) was founded in July 2001 by Michèle Gonzalves and communicates with approximately 160 patients. The head office is based in Gosselming (Moselle, department 57). The Council has 10 members, all volunteers.
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Alambra, the Brazilian association for Lymphangioleiomyomatosis patients, was founded in 2004 by Simone Garcia Ribeiro and Flávia Patitucci Sobroza. There are currently 120 LAM patients registered in the database of the Clinics Hospital of the Faculty of Medicine of the University of São Paulo.
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LAM Academy is a joint project between the Department of Respiratory Medicine and Allergy at the Karolinska University Hospital in Stockholm, Sweden, LAM patients and their relatives.
LAM Academy was founded in 2008 by LAM patient Anette von Koch and Medical Advisor Maryam Fathi, MD, PhD, from Karolinska University Hospital. LAM Academy communicates with more than 55 LAM patients. As there are less than 10 million inhabitants in Sweden, around 10 women per million are diagnosed with LAM.
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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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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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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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