News & Events

Lymphedema & Lymphatic Disease Matters, LE&RN responds to Coronavirus, March 2020

Lymphedema & Lymphatic Disease Matters, LE&RN responds to Coronavirus, March 2020
Photo by Martin Sanchez on Unsplash

As is the case for all of us and for every organization, LE&RN is actively addressing the Covid-19 epidemic to support the community. This month's newsletter is dedicated to informing you, our committed supporters, of how we are responding to the crisis.

 

LE&RN operations and staff

LE&RN is headquartered in midtown Manhattan with a satellite office on Long Island. The entire New York City area is now the epicenter of the crisis in the United States. All LE&RN staff are currently safe, working from home, and practicing social distancing as we all do our part to "flatten the curve" and attempt to not overwhelm our country's medical response to this crisis. Every LE&RN staff member remains committed to continuing to pursue LE&RN's mission during this challenging time.

 

LE&RN releases COVID-19 (Coronavirus) Guidelines for the Lymphatic Disease Community

In conjunction with the Lymphoedema Support Network (LSN) in the UK, LE&RN has published COVID-19 (Coronavirus) Guidelines for the Lymphatic Disease Community. On March 17, LE&RN President & CEO William Repicci wrote to LE&RN Supporting Members to keep them up to date on the organization's response to the pandemic. 

 

National lobbying efforts continue

A key LE&RN event, Lobby Days on Capitol Hill, which were to take place this week, had to be put on hold as a result of the national emergency.

However, while face-to-face meetings with legislators are not possible at the moment, we have not and will not give up our crucial agenda which we will continue to pursue through a series of conference calls. These calls will include a person with LE/LD from each state and district, a lymphatic researcher, a medical practitioner, and a person from industry.

Far from pulling back, we plan to visit with more legislators than ever and our goals remain steadfast:

  • the establishment of a Lymphatic Commission to definitively state the need for lymphatic research throughout the National Institutes of Health.

  • lymphatic-related medical research proposals must be accepted by the Department of Defense 

  • a CDC lymphatic disease awareness campaign

  • passage of the Lymphedema Treatment Act (LTA)

To succeed in this ambitious agenda at this challenging time, we need your help. We will be asking you to share YOUR STORY. That story will be printed and presented to every legislator from your state before our conference calls with them. You will receive details on this campaign early next week. Please be sure to look for that email and to participate in this important initiative

Pictured: LE&RN National Spokesperson Kathy Bates testifying before the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies in April 2019.

 

DC Walk & Rally to Fight LE & LD is now virtual

LE&RN's DC Walk & Rally to Fight LE & LD was scheduled to take place on the steps of the Lincoln Memorial this weekend. It is disappointing to all of us that we cannot be together for this fun and inspiring annual tradition. But we still need you to participate! This #LymphWalk is now virtual and is extended through the end of the year. So wherever you are, sign up to run or walk with us, fundraise, and donate. Share your photos and videos on social media. Use the hashtags #LymphWalk and #RaceInPlace. We can still come together as a community and make a difference.

 

Support for researchers

This month, we were pleased to share a generous offer from Mary Ann Liebert, Inc., publishers of Lymphatic Research & Biology, the official journal of LE&RN.

In response to the COVID-19 pandemic, the company has allowed free access to all papers within its portfolio related to relevant coronavirus research in hopes that it can be a useful resource as a successful vaccine is developed and implemented.

Here is a direct link to access all coronavirus-related research within the Liebert portfolio: www.liebertpub.com/coronavirus.

Now more than ever, the world is relying on the efforts of the medical research community and at LE&RN we remain ever-more committed to supporting that crucial work.

 

Visit LE&RN's Virtual Expo

LE&RN's Virtual Expo was created to allow individuals affected by LE and LD to see products and services designed for them -- just as they would at a conference center expo, but conveniently offered on-line. This idea suddenly takes on great importance in this time of social distancing. Visit our LE&RN'S Virtual Expo today, and see what is out there for you -- without ever leaving home.

 

Facebook fundraising continues

We appreciate the continued robust conversation, shares, and fundraising on LE&RN's Facebook page during this time. Thank you.

 

LE&RN Supporting Membership

LE&RN's Supporting Members are the reason LE&RN can continue to pursue our shared mission. To our committed Supporting Members, we thank you for staying the course. If you are not yet a Supporting Member, we need you to join the fight, now more than ever.