LGDA Names New Executive Director

Photo of Dr. Michael KellyThe Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) has selected Dr. Michael Kelly, the current Chief Medical Officer, as its new Executive Director. Dr. Kelly will succeed Jack Kelly, who is retiring at the end of May after nearly 14 years of leading the organization.

Dr. Kelly joined the LGDA as the Chief Medical Officer in 2020. In that capacity, he has worked with leadership to develop and implement new programs that increase the voice of the patient community within the foundation and to build networks between the patient community, clinicians and scientists. The LGDA is a patient advocacy organization founded to improve the lives of patients with Complex Lymphatic Anomalies (CLAs) through support, education, advocacy and research.

Dr. Kelly brings years of experience as a director of clinical and research programs focused on pediatric and young adult patients with rare diseases, including CLAs.

“I appreciate the board’s confidence in me, and I’m delighted to have the opportunity to lead such a great organization. The LGDA is resilient and I know together we can continue to work with and for our patient community to stay focused on important issues that lead to improved quality of life and ultimately cures” Kelly said. “I’m especially grateful to Jack Kelly and Scot Wiesner for their guidance. The LGDA is strong today because of their tireless work over the past decade.”

As executive director, Kelly will work closely with the staff and the LGDA board to ensure the organization continues to meet the changing needs of the CLA patient community. One of his first tasks as director will be to oversee the LGDA’s upcoming international conference on October 2 and 3, 2021. He will also lead efforts to improve LGDA governance, fundraising and outreach.

“It is such a hopeful time for the CLA and other rare disease communities” according to Kelly. He stated, “New technologies have led to important biological discoveries. Industry has shown a much greater interest in developing and improving patient access to new treatments. The primary role of the LGDA is to keep the patient voice front and center while forging collaborations and partnerships that accelerate treatments and cures.”

Scot Wiesner, the Chairman of the Board for the LGDA stated “While we are very excited for Jack Kelly to be able to enjoy his retirement and be able to spend more time with his wonderful wife, we are just as excited to be welcoming Dr. Kelly as our new Executive Director. He has served our patient community as a personal doctor well before joining us as our Chief Medical Officer. The LGDA is in great hands.”

Save the Date – Registration Opens Soon!

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.

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