Since their daughter was diagnosed with GLA in the summer of 2018, the Thomas family has made the 3 hour drive from their California home
Mechanisms of Bone Loss in Complex Lymphatic Anomalies
Michael Kelly, MD, PhD, Chief Medical Officer for the LGDA and LMI, presented this webinar providing an overview of the four complex lymphatic anomalies: generalized lymphatic anomaly (GLA), Gorham-Stout disease (GSD), Kaposiform lymphangiomatosis (KLA), & central conducting lymphatic anomaly (CCLA) and their impact on bone. This event was part of the Rare Bone Disease TeleECHO Clinic Series, an educational program in partnership with the Rare Bone Disease Alliance, of which LGDA and LMI are members, and Project ECHO™ (Extension for Community Healthcare Outcomes), that has as its goal to build capacity to safely and effectively diagnose and treat rare bone diseases and disorders.
Building Our Research Network
The 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 collaborative initiatives related to patient care and clinical and translational research engagement. (Dr. Kelly is not related to the LGDA president, Jack Kelly).
Kimberley E. Steele, MD, PhD, is joining the LGDA in the newly created position of Director of Patient-Led Research. As our research network program expands, Dr. Steele will work to strengthen and ensure collaboration among and across our three international pillars: our Patient Network, Clinical Care Network, and our Research Network. Dr. Steele and her husband, Dr. Greg Prokopowicz, are parents of a young boy with KLA.
Tracy Milne began her new position as LGDA Programs Assistant in May. Tracy has long been associated with the LGDA as a founder of LGDA-UK and as a parent of a young boy with GLA. Prior to accepting this new role, Tracy served as a member of the LGDA Board of Directors for 3 years, and as Chair of the board of the Lymphangiomatosis and Gorham’s Disease Alliance – Europe.
We are so very excited with the new strength in expertise and commitment to the growth of the LGDA in our pursuit of improving the lives of our patient community.
The LGDA extends tremendous thanks to the Chan Zuckerberg Initiative-Rare As One award received earlier this year, making possible these exciting additions to the foundation.
LGDA is Rare As One!
We’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 their diseases and scale these efforts. To support the project, CZI will provide funding of $450,000 over two years for each of the 30 selected organizations and will create shared infrastructure to lower the barriers to patient-led research and enable patient communities to learn from one another.
Through Rare As One, the LGDA will further develop a natural history of complex lymphatic anomalies through three networks: patient, clinical and scientific.
2020 Bike Ride for Research an International Success!
Physician Guide for GLA, GSD, KLA and CCLA
In June 2016 the LGDA and its partners, Lymphatic Malformation Institute and Alfie Milne Lymphangiomatosis Trust, brought together 52 physicians from 16 specialties to develop a consensus-based guidelines for comprehensive evaluation of the complex lymphatic anomalies (CLA) generalized lymphatic anomaly (GLA) previously called lymphangiomatosis, Gorham-Stout disease (GSD), kaposiform lymphangiomatosis (KLA), and central conducting lymphatic anomaly (CCLA). The results of that effort have now been published in the journal Pediatric Blood & Cancer.
Read the abstract here: https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.28036
Advocacy Network for Vascular Anomalies Formed
The LGDA and Klippel-Trenaunay Support Group have joined together to form the Advocacy Network for Vascular Anomalies (ANVA). Through this new effort ANVA member organizations will present a unified voice for all vascular anomalies patients to facilitate collaboration among clinical and research networks. Advocacy organizations for vascular anomalies patients interested in joining ANVA may contact us for more information.
The Power of One
Featured News & Events
Warriors in the News
Finding the LGDA was a lifeline for Tracy and her family ‘Feeling that you belong somewhere – helps. Knowing that you can talk to someone
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.