Category Archives: LGDA Mission

LGDA @ ATS International Conference

The American Thoracic Society International Conference – Meet the Experts session in Philadelphia on Saturday, May 18, 2013, was a great success for the lymphangiomatosis and Gorham’s disease community. In attendance were 3 patients, 4 parents of patients, 2 spouses of patients, 1 friend of a patient, and 3 physicians (pulmonologist, endocrinologist, and orthopedic surgeon)! For two and a half

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Central Florida LGDA Golf Tournament

Event:  Central Florida LGDA Golf Tournament Start:  May 18, 2013 12:00 pm End:   May 18, 2013 6:00 pm Cost:  $55.00/person Organizer:  Jessica & Michael Glover Updated: April 5, 2013 Venue: Stoneybrook West Golf Club Address:  Google Map 15501 Towne Commons Blvd.,Wintergarden, FL, 34787, United States The first Central Florida Lymphangiomatosis & Gorham’s Disease Alliance Golf Tournament is underway! Proceeds, donations-in-kind and registration

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LGDA Establishes Patient Registry

Will Participate in Global Rare Diseases Patient Registry The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is pleased to announce the establishment of the International LGDA Registry for Lymphatic Malformations (LGDA Registry), a major goal of the LGDA since the organization’s founding. The LGDA Registry will be instrumental in accelerating the pace of basic and clinical research for the life-threatening disorders

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LGDA 5th Anniversary

  The Lymphangiomatosis & Gorham’s Disease Alliance is pleased to commemorate the recent 5th-Year milestone of its founding by Jana K. Sheets.   Jana had a dream in two parts: one, to build an organization of people who would support one another in their journeys with lymphangiomatosis and Gorham’s disease; and, two, to promote awareness about these diseases, help patients

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Community Event Supports Work of LGDA

5K/Run-Walk Marks the Battle of Young Girl Folks in the community of Orrick, Missouri, got together a few months ago and decided to do something  to give support and hope to a young girl in town,  Maci Jeffries.   Maci is 11 years old and has been struck with Gorham’s disease,  a very rare disorder which can seriously affect the musculoskeletal

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Warrior Craft Project for 2013 Golf Outing

  To add a personal touch to the LGDA Golf Outing Fundraiser for 2013, we are issuing this invitation to Lymphangiomatosis and/or Gorham’s disease patients—Warriors as we call them in the LGD Alliance— to create an item (or items) on their own to be included in the raffle done in conjunction with the Golf Outing. Your contribution may be anything

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Golf Outing Raises $41,000+

Organizers of 2nd Annual LGDA Golf Outing: Support ‘humbling’ to help cure 2 of world’s rarest diseases   BROWN DEER, Wis. (LGDA News) – The second annual Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) Golf Outing was already deemed a success before the first ball was even put on a tee, but even the organizers never expected this. The outing and

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Founder’s Award

Dr. Denise Adams, Recipient of the LGDA’s Founder’s Award The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is pleased to announce that it made its 2nd Founder’s Award to Denise Adams, MD, Professor, UC Department of Pediatrics, Fellowship Director, Division of Hematology/Oncology, Medical Director, Comprehensive Hemangioma and Vascular Malformation Clinic, Cincinnati Children’s Hospital Medical Center. Jack Kelly, president of the LGDA,

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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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