Category Archives: Warriors in the News

Finding Help and Support

Finding the LGDA was a lifeline for Tracy and her family ‘Feeling that you belong somewhere – helps.  Knowing that you can talk to someone that understands – helps.  Being able to share your experiences so others can learn from it – helps.  So why is it still the case that after being diagnosed with a rare disease you are

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Supporting the Mission

All over the world, Warriors and the people who care about them make great efforts through fundraisers and awareness events to support the LGDA’s mission. Generalized lymphatic anomaly (GLA, also known as lymphangiomatosis), kaposiform lymphangiomatosis, Gorham-Stout disease (GSD), central conducting lymphatic anomaly (CCLA), and the other rare lymphatic anomalies are truly orphan diseases. Unlike some more common diseases of the

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Family Hosts World #LGDAwareness Event

The image is of an article that appeared in the local newspaper where the van der Velden family lives in The Netherlands. The family is hosting an event in conjunction with the first World #LGDAwareness Day on May 26, 2017. Below the image is a translation of the text.   Family from Dordrecht asks for awareness of rare disease Fifteen-year-old

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Warrior Featured in ATS Publication

ATS Patient Voices 3: Their Stories, Their Words, a new ebook release by the American Thoracic Society Public Advisory Roundtable (ATS PAR), features the story of LGDA Warrior Megan Gray’s journey with lymphangiomatosis. Megan’s story will be familiar to many of those diagnosed with lymphangiomatosis and their families; the LGDA is grateful to Megan and her family for sharing it

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National Organization for Rare Disorders to Honor LGDA Patient and Mother

NORD to Present Awards at “Portraits of Courage” Celebration, May 8, 2014, in Washington DC Rare disease patients, patient advocates, two members of Congress and companies that have brought novel new therapies to patients will be honored at the “Portraits of Courage Celebration” of the National Organization for Rare Disorders (NORD) on Thursday, May 8, at the National Building Museum

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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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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 Alfie Starts to School

Alfie Milne’s parents, Mark and Tracy Milne, generously shared his story on our website earlier this year. At the time Alfie had been on Rapamune/sirolimus for a few months and had just received his walking frame. Now, Alfie has been on the drug for almost a year, since September 2011, and is doing remarkably well. “The change in his health

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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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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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