It’s time again for the Million Dollar Bike Ride! Now in its sixth year, this effort from our community has directly funded 10 research projects focused on our rare lymphatic diseases. In addition, the requests for proposals for research have identified other worthy projects that LGDA & LMI have funded through other channels. Every dollar donated to reach our goal
» Read moreAs the advocacy organization for the rare vascular anomalies of GLA/lymphangiomatosis, GSD, and KLA, the LGDA is aware of the lack of resources for adults with these conditions. We are working on recruiting adult providers but we need hard data from patients to help define where clinical resources are lacking. We have developed a survey to gather your experiences as
» Read moreSenator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation. This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community. Prior to the ODA, there were only 34 therapies
» Read moreRepresenting the LGDA at the 10th Annual Health Care Transition Research Consortium Research Symposium and the 19th Annual Chronic Illness and Disability Conference: Transition from Pediatric to Adult-based Care, in the Texas Medical Center were LGDA Director of Patient Programs, Lisa Klepper, and LGDA board member, Tiffany Ferry. The meetings were held October 24-26, 2018 and co-hosted by Baylor College
» Read moreFor extraordinary accomplishments in discovery and advancement in the field of lymphatic science for the benefit of our worldwide patient community presented to Michael T. Dellinger, PhD Assistant Professor Division of Surgical Oncology Department of Surgery Hamon Center for Therapeutic Oncology Research UT Southwestern Medical Center Dallas, Texas The LGDA’s award for a scientist was made at the 2nd
» Read moreThe LGDA Wisconsin group is holding its eighth annual fundraiser, this time a professional improv comedy night by ComedySportz Milwaukee. Wisconsin events have raised more than $130,000 for the LGDA so far. For more information or to sign up, visit http://weblink.donorperfect.com/ComedySportz2018. See the LGDA Wisconsin Facebook page here: https://www.facebook.com/lgdagolfouting/ Register now for a great night of fun and laughter to support the
» Read moreOn July 29, 2018, the family of Adrian Santos hosted its second party to celebrate his 4th birthday and raise awareness about kaposiform lymphangiomatosis (KLA) and money for the LGDA to support research efforts. Once again, Adrian’s great aunt Linda Sutherland organized the event. Activities for the kids included face painting, animal balloons, crafts, and a Mad Scientist demonstration. Cleveland
» Read morePresented by Maxim Itkin, MD, Director, HUP/CHOP Center for Lymphatic Imaging and Interventions Abstract: Lymphatic malformations (LM) are conditions that are characterized by proliferation of the lymphatic tissue in multiple organs. The major cause of mortality and morbidity in patients with LM is deterioration of pulmonary function due to chronic chylous effusions and progressive interstitial lung disease. The etiology of
» Read morePresented by Matt Hawkins, MD, Director – Pediatric Interventional Radiology, Children’s Healthcare of Atlanta at Egleston; Medical Director – Vascular Anomalies Clinic, Children’s Healthcare of Atlanta; Assistant Professor – Emory University School of Medicine Dept of Radiology and Imaging Sciences Abstract: Diagnostic imaging has become the primary means by which a number of lymphatic anomalies are diagnosed. More specifically, recent
» Read morePresented by Ionela Iacobas, MD, Assistant Professor of Pediatric Hematology-Oncology and Medical Director, TCH Vascular Anomalies Center, Texas Children’s Hospital, Baylor College of Medicine Abstract: A new diagnosis of lymphatic malformation presenting with a micro/macrocystic area AND an additional symptom may trigger very specific diagnostic studies for clear classification. This discussion will try to differentiate the 4 entities (Generalized Lymphatic
» Read more