The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) has selected Dr. Michael Kelly, the current Chief Medical Officer, as its new Executive Director. Dr. Kelly will succeed Jack Kelly, who is retiring at the end of May after nearly 14 years of leading the organization. Dr. Kelly joined the LGDA as the Chief Medical Officer in 2020. In that capacity, he
» Read moreDear Friends & Family, It is with sincere regret that the time has arrived to announce my retirement from the LGDA, effective June 1, 2021. At the same time, I am very excited about our new Executive Director whose appointment will be announced imminently! The LGDA was founded by my late daughter, Jana K. Sheets in 2007. Jana had recently undergone a
» Read moreThe Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) has been invited as the newest guest organization of the Trans-NIH Lymphatic Coordinating Committee (TNLCC). Dr. Michael Kelly, the Chief Medical Officer will represent the LGDA and our patient community in meetings with this important research committee. In 2002, the Trans-NIH Lymphatic Coordinating Committee was formed to enable program staff across NIH to
» Read moreWe’re part of the Chan Zuckerberg Initiative’s (CZI) Rare As One Project — a group of 30 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases. The Project aims to strengthen the efforts of the selected patient-led groups and will help these communities of patients, researchers, and clinicians work together to advance progress against
» Read moreThe LGDA and the Lymphatic Malformation Institute (LMI), our research partner, are pleased to announce Andrea Del Fattore, PhD, has been awarded $81,965 to fund his project Understanding the effects of Sirolimus/Zolendronic acid treatment on bone remodeling activity in patients with Gorham-Stout disease. Dr. Del Fattore is the Head of Bone Physiopathology Laboratory at Bambino Gesù Children’s Hospital in Rome.
» Read moreThe LGDA is very pleased to announce the following new team members: Michael Kelly, MD, PhD, a pediatric hematology-oncology specialist with over twenty years’ leadership in the care of children and adults with vascular anomalies, joined the LGDA in June of 2020 as Chief Medical Officer. In this newly created position, Dr. Kelly will provide strategic oversight for foundation
» Read moreDr. Kimberley E. Steele serves the LGDA and LMI as Director of Patient-Led Research. She has shared the story of Michael’s diagnostic journey, her perspective, and the video Michael made to tell his story. When Michael was just turning 6 years old, I received a call while at work that Michael had a high fever. It was unlike any “kid”
» Read moreDue to the recent COVID-19 outbreak, and social distancing recommendations, the Million Dollar Bike Ride is going VIRTUAL!This will allow our supporters to choose the activities they want to do to raise funds and awareness and complete their goals over time. We would like to use this opportunity to have our very first global event, where it doesn’t matter where
» Read moreIn an effort to address concerns of those living with rare vascular anomalies, several patient advocacy organizations have compiled a list of frequently asked questions from our affected families concerning COVID-19. The medical advisors from the patient advocacy organizations worked together to prepare responses to these questions. The vascular anomalies community advocates have jointly collaborated with our medical advisors to
» Read moreSince their daughter was diagnosed with GLA in the summer of 2018, the Thomas family has made the 3 hour drive from their California home to Stanford for her treatment more than 2 dozen times. When Cece, now 2 years old, was diagnosed, Mr. Thomas’ coworkers rallied around the family to help. When he was invited to participate in his
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