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This letter is an invitation to participate in a research survey. The purpose of the research is to answer important questions about medication use and quality of life in LAM patients who are considering or who have undergone lung transplantation.
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Facilitating and funding research has always been the core mission of The LAM Foundation. In this regard, we have achieved exceptional results as a rare disease organization and a united community.
This is possible when each of us 1) identifies what we can do and 2) TAKES ACTION. Together we can stimulate new ideas, unleash new funding and deliver a cure for LAM.
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Vaccines are a wonderful addition to the world of medical care, providing so much benefit for people, and with such safety. And vaccines are the ultimate example of preventive medical care, producing great protection from what can be disastrous infections, particularly in patients with significant lung problems.
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Rebecca Crouch, DPT, MS, CCS talks about how the advantages of regular exercise and how you can even manage to fit exercise in on those terrible, ugly, “I don’t want to get out of bed” days.
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Gene Sullivan, MD, Emeritus Board Member of The LAM Foundation and former Deputy Director of the Division of Pulmonary and Allergy Products at the USFDA answers questions about the difference between generic and name brand drugs, specifically in regards to sirolimus and Rapamune.
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This time last year, I discovered an opportunity to apply for a grant through my pharmacy school program at the UNC Eshelman School of Pharmacy. I knew that I wanted to find a way to use the grant to help educate physicians about LAM, but I was not sure exactly what or how to go about it. I called Sue Sherman and told her about the opportunity and we brainstormed. Sue informed me the new LAM Guidelines would be published in 2016 by the American Thoracic Society. In healthcare, promoting guidelines can be a challenge. It is both expensive and time consuming, so I pitched the idea to Sue that I write a grant to help spread the news about the new guidelines.
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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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This year’s Breath of Hope Gala was a complete sell out with over 410 people in attendance! And with a crowd like that, everything was “off the charts”!
Our Breath of Hope Silent Auction tables had 50 fabulous donated items up for bid, generating well over $9,000. That’s $4,000 + more than last year!
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The 2016 Rare Lung Diseases Research Conference, LAMposium and Breath of Hope Gala took place last week and we are hearing it was one of the most successful gatherings, to date, for The LAM Foundation community. If you were able to join us, we are thrilled we could all spend time together. If you were unable to attend, we hope to see you next year and want to share some highlights from the conference.
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