Category Archives: Latest News

LGDA to Participate in Trans-NIH Lymphatic Coordinating Committee (TNLCC)

Advocacy, Awareness, Latest News, LGDA Mission

The 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

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LGDA is Rare As One!

Latest News, 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

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2020 Million Dollar Bike Ride Research Award

Latest News

The 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.

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Building Our Research Network

Latest News, Rare As One

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

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Michael

Latest News

Dr. 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”

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COVID-19 Questions and Answers for Complex Vascular Anomalies Families

Latest News

In 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

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Donor Fair Raises Thousands for LGDA

Awareness, Community News & Events, Feature, Fundraising, Latest News, Support the Mission

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 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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2019 Scientific Year in Review

Fundraising, Latest News, Support the Mission

A number of research studies were published in 2019 that will benefit patients around the world with complex lymphatic anomalies (CLAs). Below is information about about some key projects that were made possible through the financial support of patients, their families, friends of the LGDA and its research partner, the Lymphatic Malformation Institute (LMI); and the willingness of patients to

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Dissecting the Mechanisms of Bone Loss in Gorham-Stout Disease

Feature, Latest News, Research News

Gorham-Stout disease (GSD) is characterized by progressive bone destruction and proliferation of lymphatic vessels.  In 2016, Andrea Del Fattore, PhD, and Andrea Bartuli, MD, and their team at Bambino Gesù Children’s Hospital, in Rome, Italy, were awarded funds raised for a research study through the LGDA’s and LMI’s participation in the Million Dollar Bike Ride (MDBR). The goal of the

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