Author Archives: admin

You’re Invited! ATS-PAR Patient-Family Forum

As a member of the American Thoracic Society Public Advisory Roundtable, the LGDA is pleased to invite you to participate in the Patient-and-Family Forum, Saturday, May 19, 2012, during the International Conference of the American Thoracic Society at the Marriott Marquis in San Francisco, CA. For the first time lymphangiomatosis and Gorham’s disease will be featured at the Forum. During

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Rare Disease Day 2012

UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE AT SHANDS HOSPITAL HOLDS 2ND ANNUAL RARE DISEASES DAY EVENT The LGDA and the Orthopaedic & Sports Medicine Institute at the University of Florida College of Medicine & Shands Hospital, Gainesville, FL, joined together to organize the 2nd Annual Rare Disease Day event, comprised of an all day exhibit featuring information booths on rare

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1st Annual Golf Outing

KEWASKUM, Wis. (LGDA News) – New friendships were forged, thousands of dollars were raised and a world record was broken at the first LGDA Golf Outing Sept. 24. Proceeds totaling about $18,000 went to the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) for research of these rare and debilitating diseases. Nearly 60 golfers and 50 more dinner attendees enjoyed a fun

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Personal Health Records

  How often have you found yourself sitting in a waiting room with a clipboard balanced on your lap trying to put complete answers in too small a space, all the while worrying that you’ll leave out something important? All doctors and hospitals ask for much of the same information at your initial visit or when you seek treatment in

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Who’s Who at ATS-PAR

Among the several scientific and medical societies and patient advocacy groups with which LGDA is affiliated is the American Thoracic Society through its Public Advisory Roundtable – Council of Public Representatives. LGDA president Jack Kelly and the LGDA were the subject of a feature article, “Who’s Who at ATS PAR,” on page 4 of the Mar/Apr 2010 edition of ATS-PAR News. This article is an excellent

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Illinois Pre-Teens Raise over $3,000 for LGDA

On behalf of the entire community of patients around the world, the LGDA would like to express a GINORMOUS THANK YOU to two young ladies in Illinois who organized a neighborhood fundraising event in support of the Alliance. Madeline’s 9-year old brother Zachary was diagnosed with lymphangiomatosis when he was three.  Madeline has always been so proud of her brother’s

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First Concensus Meeting on Lymphatic Anomalies

  Led by the outstanding efforts of two members of the Medical Advisory Council of the LGDA—Denise M. Adams, MD, Medical Director, Hemangioma and Vascular Malformations Clinic at Cincinnati Children’s Hospital, and Steven J. Fishman, MD, Co-Director, Vascular Anomalies Center, Children’s Hospital Boston—the first Consensus Meeting on Lymphatic Anomalies was held at Children’s Hospital Boston on February 4, 2011. Patients

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Walk for Lymphangiomatosis

  When their son Ethan was diagnosed with lymphangiomatosis in October 2009 at age 7 months, Nick and Kelly Moss were devastated. Once the shock wore off, they decided they had to do something to help their son and others living with this disease. On July 24, 2011, Nick set out on a 1500-mile military style walk across the United

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CaringBridge

The LGD Alliance is a proud CaringBridge Partner. Many members of our community have created a free CaringBridge page to help them keep in touch with friends and family as they deal with the challenges of living with lymphangiomatosis and Gorham’s disease. CaringBridge’s free websites offer a personal and private space to communicate and show support, saving time and emotional

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