Research Matters from the Lymphatic Education & Research Network

Abstract

LE&RN Centers of Excellence Launch Underway

The Lymphatic Education & Research Network (LE&RN) has now accepted letters of interest from institutions to be part of the initial Centers of Excellence launch. Qualifying institutions will be announced in December. LE&RN Centers of Excellence will provide a geographically diverse network of multidisciplinary clinical care and service centers for individuals and families affected by lymphedema (LE) and lymphatic diseases (LD). Learn more at (www.lymphaticnetwork.org/site/centers-of-excellence).

LE&RN Virtual Expo Redesigned

Thanks to the generous support of Tactile Medical, LE&RN redesigned and improved the popular Virtual Expo website feature. Dozens of companies that serve the LE, LD, lipedema (LI), and venous disease communities are represented, making it easy to find needed products and services (https://lymphaticnetwork.org/expo).

Kathy Bates Testifies on Capitol Hill

On April 9, 2019, LE&RN Spokesperson Kathy Bates appeared before the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies to testify on behalf of the LE, LD, and LI communities. Rep. Rosa DeLauro (CT), House Committee on Appropriations, Chair, requested Ms. Bates' attendance when the two met during LE&RN Lobby Days in March. Ms. Bates also appeared on Morning Joe (MSNBC) the day before this testimony.

William Repicci Bylined in Vein Magazine

Dean J. Bender, Executive Director of the American Vein & Lymphatic Society (formerly the American College of Phlebology), and William Repicci, President and CEO at LE&RN, coauthored “Why lymphedema? Why me? Why now?” for Vein Magazine (https://www.veindirectory.org/magazine/article/industry-updates/why-lymphedema-why-me-why-now?).

LE&RN Run/Walks Partner with Major Medical Centers and Universities

With the original #LymphWalk in New York going into its 10th year (10/19/19) and LymphWalks becoming more popular as the fundraisers expand to more and more states, LE&RN has been fortunate to gain the attention of local major medical centers and universities, and is now in partnership with a growing number. The Massachusetts 5K Run/Walk on May 18, 2019, was co-presented with BIDMC/Harvard Medical School Teaching Hospital in Boston. The June 23, 2019, California 5K Run/Walk is co-presented with the University of Southern California.

Kathy Bates Addresses American Society of Breast Surgeons

LE&RN Spokesperson Kathy Bates delivered a powerful keynote address to 2,000 surgeons at the meeting of the American Society of Breast Surgeons (ASBrS) in Dallas, TX, in May. Ms. Bates shared the story of her battle with cancer and lymphedema and told surgeons to tell patients about LE before surgery, conduct early surveillance for the disease, dedicate themselves to long-term follow-up, and to attend to the psychosocial trauma associated with LE. LE&RN President and CEO William Repicci introduced Ms. Bates and offered LE&RN's 7-credit Lymphatic-Vascular CME course to ASBrS members, free of charge. LE&RN thanked Dr. Dennis Holmes, who chaired the meeting, and Beth Boyd and Ryan Cliche of the ASBrS Foundation, who secured Ms. Bates' invitation to speak.

LE&RN Receives Top-Rated Award from Great NonProfits

LE&RN was once again given top-rated status on the website Great NonProfits, thanks to the positive reviews received from supporters.

LE&RN Welcomes New Honorary Board Members/Celebrity Ambassadors

LE&RN welcomes its newest honorary board members/celebrity ambassadors: actor-comedian Tone Bell and The Bachelorette contestant Cameron Ayala.

LE&RN World Health Day Petition

As in past years, LE&RN continued to petition the World Health Organization to make “Lymphedema: Awareness and Cures” the focus of the upcoming April 7 World Health Day. The petition now has >21,000 signers (www.change.org/p/world-health-organization-who-designate-ld-awareness-cures-as-the-world-health-day-campaign-for-who).

American Venous & Lymphatic Society Members Offered Free CME Access

LE&RN has offered members of the American Venous & Lymphatic Society (formerly the American College of Phlebology) free access to LE&RN's 7-credit Physician CME: Lymphatic-Vascular Disease: Diagnosis & Treatment (https://lymphaticnetwork.org/treating-lymphedema/cme-seminars).

LE&RN Lobbies for Increased Funding from Department of Defense and Veteran's Administration

More than 60,000 U.S. military personnel have been exposed to “burn pits” (toxic open-air garbage incinerators) in Iraq and Afghanistan. Thousands of those veterans are now reporting disease, such as cancer, possibly related to exposure. LE&RN is now fighting to get the Department of Defense and Veterans Affairs to drastically increase research and services impacting military personnel. If you or someone you know is in the military and has been diagnosed with LE that is potentially related to service in the vicinity of the burn pits, call LE&RN at (516) 625-9675 or e-mail at LERN@LymphaticNetwork.org.