MARK YOUR CALENDARS! The LAM Foundation is pleased to announce the 2025 International LAM Research Conference & LAMposium will be held September 26-28, 2025 at the Westin at Crown Center in Kansas City, MO. The International LAM Research Conference & LAMposium is The LAM Foundation’s marquee event, which includes a state-of-the-art scientific meeting and a dedicated patient and family conference. Next year’s event will continue the highly successful format of blending patient and family participation with leading-edge discussions about basic and translational advances in LAM research. We look forward to welcoming attendees from around the world to this important conference that will celebrate the LAM community's research innovation, courage, and resilience as we strive to find better treatments and ultimately a cure for LAM. More details to come as we prepare to celebrate our 30th anniversary. We hope to see you there!
The LAM Foundation
非盈利组织
Cincinnati，Ohio 761 位关注者
Global leader in the fight against lymphangioleiomyomatosis (LAM) - a rare lung disease affecting primarily women.
关于我们
The LAM Foundation urgently seeks safe and effective treatments, and ultimately a cure, for lymphangioleiomyomatosis (LAM) through advocacy and the funding of promising research. We are dedicated to serving the scientific, medical and patient communities by offering information, resources, and a worldwide network of hope and support. The LAM Foundation is the global leader in the fight against lymphangioleiomyomatosis (LAM). Founded in 1995 as a grass roots effort, The LAM Foundation has evolved into an organization that is described by the National Heart, Lung and Blood Institute (NHLBI) as "a model for voluntary health agencies." LAM is a rare and progressive lung disease that primarily affects women and has no known cure. Headquartered in Cincinnati, Ohio, The LAM Foundation provides support and education for women with LAM and their families, engages doctors and scientists to continue to learn more about the disease and raises funds for continued research. In May 2015, the FDA approved Rapamune as the first effective treatment for LAM, based on research and patient engagement supported by The LAM Foundation. Through the efforts of a committed Board of Directors and staff, the Foundation has raised more than $26 million in 24 years. Over 60% of this has been committed to research which further seeded an estimated $40 million in subsequent funding from federal sources to advance the field of LAM research. This research effort has produced more than 125 grant-related publications, a diagnostic biomarker that can obviate the need for lung biopsy, and a pivotal clinical trial that has identified the first treatment. In addition to its world-renowned Scientific Board, 60+ LAM Clinics have been established across the globe which focus referrals to expert regional centers and facilitate clinical trials. This ‘distributed expertise’ model fosters scientific interest in LAM at academic medical centers around the country and provides care close to home.
- 网站
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https://www.thelamfoundation.org
The LAM Foundation 的外部链接
- 所属行业
- 非盈利组织
- 规模
- 2-10 人
- 总部
- Cincinnati，Ohio
- 类型
- 非营利机构
- 创立
- 1995
- 领域
- Lung、Pulmonary、Rare Lung Disease和International
地点
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主要
获取路线
4520 Cooper Rd, Suite 300
US，Ohio，Cincinnati，45242
The LAM Foundation 员工
动态
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Pursue Your Dreams through the #RAREis Scholarship Fund Living with a rare disease means managing unique challenges, including frequent doctor visits, rigorous treatment regimens and hospitalizations, and exposure risks. While quality and duration of life continue to improve thanks to improved diagnosis and treatment approaches, individuals living with rare diseases still face disparities in achieving traditional life milestones. That’s why the EveryLife Foundation for Rare Diseases established the #RAREis Scholarship Fund – to enrich the lives of adults living with rare diseases by supporting their educational pursuits. Thanks to the support of Amgen, The EveryLife Foundation for Rare Diseases will provide one-time awards of $5,000 scholarships to 104 rare disease recipients in 2025. Applications will be open from March 17 through April 28, 2025. Learn more on The Everylife Foundation's website: https://ow.ly/becH50VjaC8
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Did you know that The LAM Foundation has a worldwide network of more than 70 LAM clinics? We can help connect you to a LAM specialist and expedite your appointment. Email us at [email protected] or call 513-777-6889 for assistance. Click the link below for more information on the LAM Clinic Network. https://bit.ly/3sSQrKj
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The Easy Breathers are at it again for their 12th Million-Dollar Bike Ride! Join us in person in Philadelphia on Saturday, June 14, or virtually from a location and date of your choice. Thanks to your generous support, The LAM Foundation's Easy Breathers has raised nearly $960,000 over the last eleven years. Join our team by March 31 to receive the early bird registration discount: https://ow.ly/T91b50VhBZq
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UPDATE: The US House of Representatives' Continuing Resolution for the 2025 federal budget passed the House with deep cuts in research funding, including the US Department of Defense Congressionally Directed Medical Research Program. We appreciate that so many of you immediately reached out to your congressional district member of the House, thank you! The passed bill now goes to the US Senate. Please see this link at TSC Alliance for more information on what you can do to let your state's US Senators know that these cuts hurt TSC- LAM patients and urge them to ensure that there is funding for the TSCRP: https://lnkd.in/eRKn226y Thank you for your quick advocacy on behalf of The LAM Foundation and TSC Alliance.
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Today, the TSC Alliance sent out an urgent notification regarding a funding cut line item in the Continuing Resolution for the federal budget expected to pass the House and Senate this week. If included, it could eliminate a dedicated funding stream from the US Department of Defense that underwrites research and would severely impact TSC LAM and other research studies. Please urge your Senators and Representatives to vote NO and instead approve a full year FY25 Defense Appropriations Act that fully funds the Congress Directed Medical Research Program. Learn more and view suggested language: https://lnkd.in/eRKn226y
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The National Disease Research Interchange (NDRI)’s private donor program allows individuals and their families to provide an invaluable resource for researchers working to discover new treatments or cures. A variety of tissue samples from women with LAM, including lung, kidney, uterus, blood, and chyle fluid are needed by LAM researchers. Please email Lisa Paschal at [email protected] to learn more about the process.
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A heartfelt thank you to all who fundraised and donated for the Rare Disease Day Challenge! Together, we not only met but exceeded our goal! #rarediseaseday #curelam #thelamfoundation
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Did you know Lymphangioleiomyomatosis (LAM) is just one of 6,000 rare diseases worldwide that affect an estimated 350 million people worldwide? As our friends at the National Organization of Rare Diseases say "Alone we are rare, together we are strong" #rare #rarediseaseday #showyourstripes #LAM
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