Category Archives: 2013 News

LGDA participates in 1st Rare Bone Disease Advocacy Day on Capitol Hill

The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is a founding member of the newly created Rare Bone Disease Advocacy Alliance, a coalition of rare bone disease organizations committed to advancing research of rare bone diseases by working directly with Congress and the Executive Branch. On September 18, 2013, advocates from the LGDA and other Rare Bone Disease Advocacy Alliance (RBDAA)

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LGDA Intercedes to find help for Child in South America

In early April 2013 the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) was contacted by Dr. Mishy Lesser, a Boston-based educator, seeking assistance for a child in the Amazon jungle region of Ecuador. Dr. Lesser had just received an urgent plea for help from a former student, Ladio Dominguez, who resides in Shushufindi, Ecuador.  Ladio spent two months in Amherst, Massachusetts, in

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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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ATS-PAR Meet the Expert 2013 – Philadelphia

  As a member of the American Thoracic Society Public Advisory Roundtable, the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) is pleased to invite you to participate in the Patient-and-Family Forum, Saturday, May 18, 2013, during the International Conference of the American Thoracic Society at the Loews Philadelphia Hotel in Pennsylvania. For the second time lymphangiomatosis and Gorham’s disease will be featured

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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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National Organization of Vascular Anomalies (NOVA) Bi-annual Conference

Recently the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) accepted an invitation from Karla Hall, Executive Director of NOVA, to attend the bi-annual conference of the National Organization of Vascular Anomalies at Cincinnati Children’s Hospital.  The gathering of patients and clinicians affected by a number of vascular/lymphatic disorders was a full day of presentations by specialists in treating and studying disorders

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Hagerstown Family Shares Story of Daughter’s Battle with Lympangiomatosis

  By MARIE GILBERT marieg@herald-mail.com 3:32 p.m. EDT, August 18, 2012* Most days, Alli Rogers is in pain. This is the reality of the young woman’s life as she battles a rare disease — one for which there is no cure. She has been in and out of hospitals, has had three surgeries, with the most recent requiring three blood

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