Author Archives: admin

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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Remembering Jack Klugman

The Lymphangiomatosis and Gorham’s Disease Alliance was saddened to hear of the death last week of actor Jack Klugman. Best known as curmudgeon Oscar Madison on the 1970’s television show The Odd Couple, Mr. Klugman was an early advocate for rare diseases, supporting the patient advocates who were trying to get the Orphan Drug Act passed by Congress and signed

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Rare Bone Disease Research Summit – Johns Hopkins University

The Lymphangiomatosis and Gorham’s Disease Alliance (LGDA), and our research partner, the Lymphatic Malformation Institute (LMI), were among co-sponsors of the Rare Bone Disease Research Summit held recently at the Johns Hopkins University Medical Center in Baltimore. Gathered at the summit were some one hundred bone scientists, clinical researchers, oncologists, surgeons, patient support organizations, and representatives from the National Institutes

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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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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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LGDA at the ATS International Conference

Each year at the International Conference of the American Thoracic Society, the Public Advisory Roundtable hosts a day-long Patient-Family Forum where patients with chronic lung diseases and their families can share experiences with pulmonary doctors and one another, learn about how to manage their symptoms, and the latest in research and treatment for a variety of diseases. At the 2012

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Distinguished Achievement Award

American Thoracic Society – Public Advisory Roundtable Honors Member of LGDA Medical Advisory Council Each year at the International Conference of the American Thoracic Society the Public Advisory Roundtable (ATS-PAR) presents the William J. Martin II Distinguished Achievement Award to a person who exhibits a passion for patients, an impressive history in public service, innovative spirit, and outstanding leadership skills.

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FAST Act

Washington D.C.—Recognizing that many patients either have no treatments available for their rare diseases or are using older therapies not designed for their disease and the need to update the Food and Drug Administrations decades-old Accelerated Approval regulation, Congressmen Cliff Stearns and Edolphus Towns on March 5, 2012, introduced House Resolution (H.R.) 4132, the bi-partisan bill known as the Faster

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