News & Events

Lymphedema & Lymphatic Disease Matters, December 2020

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December 2020

From William Repicci, President & CEO

The past year was more difficult than we could have imagined when 2020 began. Many have suffered devastating losses, and LE&RN's programming and agenda were threatened as funding sources diminished or evaporated altogether.

However, committed supporters stepped forward, including the Stavros Niarchos Foundation which funded our Centers of Excellence project, fulfilling a dream of LE&RN since its inception 22 years ago. Ian Laming and Stephanie Free offered to match up to $50,000 of funds raised during our Annual Appeal. Many of you met that challenge and gave generously. We are now nearing our $50,000 goal.

We end 2020 with an epic win on Capitol Hill that promises to transform the future of lymphatic disease research, and we have realized a long-held ambition to establish Centers of Excellence around the world.
 

As we look to 2021 with great hopes, we offer our appreciation for your confidence and inspirational support. Thanks to you, our commitment to fight lymphatic diseases is further strengthened.

I am pleased to present the December edition of Lymphedema & Lymphatic Disease Matters.

 

National advocacy success

LE&RN's lobbying efforts have led to the final U.S. FY2021 Appropriations Bill including direct and strong language calling for the establishment of a National Commission on Lymphatic Diseases. This is a monumental achievement fought for by LE&RN activists which brings unprecedented attention to lymphatic research. LE&RN also succeeded in our request that $1.5 million be appropriated to the CDC for chronically neglected disease awareness, with lymphatic diseases provided as the sole example. We must continue to fight for the inclusion of lymphatic diseases in the Department of Defense (DOD) Peer-Reviewed Medical Research Program (PRMRP) but we have made great progress, affording an excellent chance at this win next year. These accomplishments, taking place during a period of national crisis, will benefit the community for years to come as we seek to establish a Lymphatic Center at NIH.

 

AMA Advocacy Campaign gains momentum

In December, LE&RN urged the lymphatic disease community to reach out to American Medical Association (AMA) CEO & Executive Vice President Dr. James Madara via email with your stories, persuading the AMA to take action and ensure that lymphatics receive increased attention at our nation's medical schools. 

Make your voice heard at the AMA
 

COVID-19 vaccination information for the LE/LD communities

In December, LE&RN published a one-page flyer containing information regarding COVID-19 vaccines for those with lymphedema and other lymphatic diseases.

Download the COVID-19 vaccination flyer
 

Centers of Excellence

Interest and participation in LE&RN Centers of Excellence continue to grow. In December 2020, LE&RN received 19 Letters of Interest. These will be evaluated by the established Global Oversight Committee, which will then invite selected institutions to complete full COE applications. There are now 25 Centers of Excellence, which are working with the patient and therapist communities to establish Affiliate Boards to improve patient outcomes and promote greater collaboration. 

Find out more about LE&RN Centers of Excellence
 

Upcoming Symposium

Lymphatic Anomalies Past to Present: A Journey of Collaboration, a free online Symposium presented by Denise Adams, M.D., and Kimberley Steele, M.D., Ph.D., will be presented on Zoom on Thursday, January 14, 2021, at 12pm EST (11am CST, 10am MST, 9am PST).