2021 Research Funding Opportunity

The LGDA and LMI are pleased to announce that the 2021 Million Dollar Bike Ride Pilot Grant Program is now open!

Two $53,460 grants are available for research on complex lymphatic anomalies.

Letters of Interest (LOIs) are due no later than Thursday, September 16, 2021 by 8pm EST.

This Request for Applications (RFA) is open to the international community. All individuals holding a faculty‐level appointment at an academic institution or a senior scientific position at a non-profit institution or foundation are eligible to respond to this RFA.

For more details about this grant program and to submit your LOI, please visit the ODC website.

How the Pilot Grant Program is Funded

Each year the LGDA and our research partner, the Lymphatic Malformation Institute (LMI), come together with patients, their families and friends, and other supporters to participate in the Million Dollar Bike Ride as Team LGDA / LMI. The Orphan Disease Center at the University of Pennsylvania matches up to $30,000 for each team.

Because of the COVID-19 pandemic, the 2021 MDBR was made virtual, allowing everyone in our worldwide community to participate again this year.

There was an incredible outpouring of support and participation this year, with participants from several countries raising money for research. And thanks to their efforts, Team LGDA / LMI exceeded its goal for 2021, to be able to offer a grand total of $106,920 for research of Complex Lymphatic Anomalies.

LGDA/LMI VIRTUAL International Conference on Complex Lymphatic Anomalies

Register Here: https://cvent.me/qMxMa9

When: October 2, 2021 and October 3, 2021
10:00 AM to 2:30 PM ET (3:00 PM to 7:30 PM GMT)

Who Should Attend:

  • Patients & Families
  • Physicians, Nurses, Allied Health Care Providers
  • Established Researchers & Post-docs
  • Medical & Graduate Students
  • Rare Disease Advocates
  • Others interested in vascular anomalies

 

Basic Science and Clinical Topics:

  • Genetic Causes of Complex Lymphatic Anomalies
  • Preclinical Models to Study CCLA, GLA, GSD, and KLA
  • New Technologies for CLA Research
  • Vascular Anomalies Registries
  • Treatments for CLAs
  • Imaging Features & Biomarkers

 

This VIRTUAL two-day event will bring together patients and their families, clinicians, and researchers from around the world to advance patient-driven solutions for complex lymphatic anomalies. The LGDA and its partners, the Lymphatic Malformation Institute (LMI) and LGD Alliance Europe, are bringing together stakeholders as part of our development of an international collaborative research network supported through our membership in the Rare As One Network.

Reserve your spot today: https://cvent.me/qMxMa9

Science Saturday: Succesful treatment of GLA with the PI3K Inhibitor Alpelisib

Episode 3: Successful Treatment of Generalized Lymphatic Anomaly with the PI3K Inhibitor Alpelisib

Sponsored by the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) in collaboration with the Lymphatic Malformation Institute (LMI), the goal of Science Saturday is to highlight the impact of research on the care of patients. This forum brings together patients, their families, and scientists highlighting how research impacts the patient journey and how patient experiences help to shape research.

In this episode Taylor, a young woman with generalized lymphatic anomaly (GLA), shares her diagnostic odyssey and how her journey was impacted by exciting research performed by Dr. Adrienne M. Hammill, MD, PhD, Associate Professor of Pediatrics, and her colleagues at Children’s Hospital of Cincinnati and University of Cincinnati College of Medicine. In the second half of the episode, Kimberley Steele, MD, PhD, Director of Patient-led Research for the LGDA, joins the discussion to explore the importance of addressing mental health and parents and doctors including older children and teens in decision-making.

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.

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