Plan to join us on Wednesday, May 12, at 1:00 PM East (10:00 AM Pacific) for a patient-centric conversation focused on life for families and patients with conditions related to Complex Lymphatic Anomalies (CLA) and to learn more about LGDA patient programs and a discussion of the patient and caregiver journey.

The event is free but registration is required: https://bit.ly/3eRb3YL

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

Photo of Dr. Michael KellyThe 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 work collaboratively to address the many diseases and conditions that involve the lymphatic system.  The National Heart, Lung, and Blood Institute (NHLBI) currently chairs the TNLCC, which has representatives from eight NIH Institutes, and engages closely with the external partners, including the LGDA. The NIH has formed and maintains strong working relationships with many of the key organizations to address lymphatic disorders.  These external organizations, including LGDA, attend the open portion of quarterly TNLCC meetings as guests, in compliance with Federal Advisory Committee Act (FACA) rules. The TNLCC facilitates trans-NIH collaborations, promotes synergy between research programs, fosters partnerships with external stakeholders, provides NIH support and representation for scientific conferences, and provides a network for mentoring trainees.

Join the 2021 VIRTUAL Bike Ride for Research

 

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 & Uplifting Athletes Partner to Support Young Researchers in Rare Disease

The LGDA is pleased to be partnering with Uplifting Athletes in its 2021 Young Investigator Draft, empowering the next generation of rare disease researchers!
Watch the video to meet LGDA draft pick Dr. Sarah Sheppard from Children's Hospital of Philadelphia. LGDA and Uplifting Athletes will each contribute $10,000 for a total grant of $20,000 to support this young investigator’s research in complex lymphatic anomalies.
About Uplifting Athletes
Uplifting Athletes is a 501c non-profit that was founded by a young football player whose father was diagnosed with a rare disease. A teammate suggested that they do something to help “since they were in a position to shine their spotlight on those who needed it the most.”
Using sports as the platform, young athletes are raising awareness and funds to partner with rare disease organizations and support young rare disease researchers and as such be the very catalyst for the medical community to find cures.
Uplifting Athletes has provided more than $300,000 in funding to rare disease researchers through its first three Young Investigator Drafts.

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