News & Events

Lymphedema & Lymphatic Disease Matters, e-news from LE&RN, April 2020

Lymphedema & Lymphatic Disease Matters, e-news from LE&RN, April 2020

Photo: LE&RN supporters attend the 2019 New York #LymphWalk in Riverside Park. This year, many #LymphWalks will go virtual.

Many Run/Walks to Fight LE & LD are now virtual

Many LymphWalks that had been scheduled are now taking place solely online and those events are 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.

 

"Managing LE Under COVID-19 Stay-At-Home Orders" now available in LE&RN's Symposium library

At the beginning of April, LE&RN offered a free online Symposium: "Managing LE Under COVID-19 Stay-At-Home Orders" with Kathleen Shillue. It was one of the best-attended Symposiums that we have ever presented. If you missed it, recorded video is now available online

 

"Lymphie LARA"

LE&RN partner ILWTI teamed up with teenage activist, Savannah Paetzel, to spread the word about "Lymphie LARA," the world's first superhero character with LE. Savannah created a children's activity book and says, "We want these coloring pages to reach children with LD and LE, and patients with children, as an engaging, fun way to educate kids about these diseases." You can find Lymphie LARA's story and official coloring page here: https://www.ilwti.com/pages/lymphie-lara and an additional activity page here: http://projectlymph.org/activites.

 

LE&RN honors Annerose Zorn-West with 2020 Impact Award

This year's LE&RN Impact Award was presented to Juzo President, Annerose Zorn-West. Juzo has always been there for LE&RN and for the community, from funding the Lymphatic Forum and Gordon Research Conference panel sessions to providing funding for the book Let's Talk Lymphoedema. Along with being sold around the world in hardback, that book is now available as a free download on the LE&RN website and has reached many thousands as a result. Annerose is now sponsoring the writing of the play that will premiere in London later this year.

 

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

In conjunction with the Lymphoedema Support Network (LSN) in the UK, LE&RN has made COVID-19 (Coronavirus) Guidelines for the Lymphatic Disease Community available as a free download on our website. 

 

LE&RN continues national lobbying efforts

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 patient representative from each state and district, a lymphatic researcher, a medical practitioner, and a person from industry. 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)

Share your story

To convince legislators that our agenda must continue to move forward, we have asked LE&RN supporters and friends to share their stories. Those stories will be printed and presented to every legislator before our conference calls to Capitol Hill. Please participate in this important initiative here: https://lymphaticnetwork.org/congress. Our thanks to mediUSA, Impedimed, and Sigvaris for their sponsorship and leadership in this effort.

 

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 LE&RN'S Virtual Expo today, and see what it can offer 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.

Become a LE&RN Supporting Member
 
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