LGDA and AllStripes are partnering to create a database that will enable multiple Complex Lymphatic Anomalies (CLA) research projects! To move this research forward, we’re looking for families/patients willing to contribute their medical records to make this effort as strong as  possible. All data shared with researchers is de-identified, or anonymized, meaning no identifying information like name or phone number is shared.

Participate by signing up to your respective condition websites, at linktr.ee/allstripes and the AllStripes team will collect the records on
your behalf, at no cost, and extract insights to power research.

If you need help deciding which CLA to sign up under or have further questions, email us support@lgdalliance.org

 

We’re excited that the Million Dollar Bike Ride will once again be a VIRTUAL event for 2021! Since 2015, with the help of our participants and supporters, this annual event has raised over $700,000 and funded 11 research projects directly related to GLA, GSD, KLA, and CCLA!

Last year we had 10 teams across the globe who participated. With the matching funds from the Orphan Disease Center, LGDA/LMI Riders awarded almost $82,000 to fund research to study the effects of combined therapy using Sirolimus and Zometa.

Once again, UPenn Orphan Disease Center will be matching donations up to $30,000 with 100% of the funds raised going towards research for GLA / lymphangiomatosis, GSD, KLA, and CCLA.

To learn more and support this important research funding effort, visit the Team LGDA / LMI event page.

2020 Million Dollar Bike Ride Research Award

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. He obtained his Bachelor’s and Master’s degrees in Biotechnology at “Sapienza” University of Rome developing his thesis on bone diseases. He earned his PhD in 2009 at University of L’Aquila (Italy). Dr. Del Fattore takes part in international scientific committees. He has earned several awards and honors, including the ECTS Iain T Boyle Award, a prestigious award for young scientists who have made significant progress and contribution to the field of bone and calcified tissue. The research activity of Dr. Del Fattore is focused on the study of rare bone diseases.

This award was made possible through your generous support of Team LGDA/LMI and the Million Dollar Bike Ride (MDBR), an annual event hosted by the Orphan Disease Center at the University of Pennsylvania. Team LGDA/LMI has raised over $700,000 through the MDBR since 2015 and has now funded 11 research projects directly related to GLA, GSD, KLA, and CCLA.

In 2016, Dr Del Fattore, his colleague Andrea Bartuli, MD, and their team began a study to help better understand the mechanisms which lead to bone loss in GSD. The results of this important research, which also was funded through the MDBR, were published in 2019 in the journal Bone.

The 2021 Million Dollar Bike Ride is scheduled for Saturday, June 12, 2021. We’re ready to ride again!

LGDA Partners with AllStripes to Accelerate Clinical Research

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