b'261 Madison Avenue, 9th FloorNew York, NY 10016Phone: (516) 625-9675 Fax: (516) 625-9410E-mail: lern@LymphaticNetwork.org Web: www.LymphaticNetwork.orgA Call to Action for Americas LeadersUp to ten million American men, women, and children live with the progressive, debilitating, and incurable lymphatic disease (LD) called lymphedema (LE). Another estimated seventeen-million women suffer from the lymphatic disease lipedema. Tens of thousands of children are born with lymphatic malformations, resulting in physical abnormalities that can shorten lives. There are no cures. There are no approved drugs. Treatments thatdo exist are often not covered by insurance. It is time for this to change.In addition, there is a continuum of diseases impacted by our lymphatic system. These include heart disease, diabetes, rheumatoid arthritis, AIDS, and obesity. Recent groundbreaking research has shown that malfunctioning lymphatic vessels in the brain also play a role in Alzheimers disease and Multiple Sclerosis. Yet, annual lymphatic research funding at the National Institutes of Health (NIH) hovers around $25 million,with only five million dollars of this dedicated to clinical lymphedema research. Whereas the Centers for Disease Control and Prevention (CDC) expends considerable resources fighting the mosquito-borne disease of lymphatic filariasis, which is not even found in the United States, considerably less attention is given to other lymphatic diseases, such as lymphedema and lipedema. And although a research study states that American medical schools spend as little as 30 minutes on the lymphatic system during a doctors education, the American Medical Association (AMA) has been silent on this issue. The only way to end this American tragedy is for those in power to boldly act.We ask that NIH establish a National Commission on Lymphatic Disease Research, as was called for inthe 2019 LSSH Appropriations Bill. We seek inclusion of lymphatic diseases as conditions eligible for study within the Department of Defenses Peer-Reviewed Medical Research Program (PRMRP). We call on the CDC to institute an education campaign and research grants on all lymphatic diseases,including lymphedema and lipedema. We ask the American Medical Association to use its voice to secure the expansion of lymphatic study inmedical school curricula so we can move beyond the status quo where medical practitioners misdiagnoseor mistreat these diseases. And we call for Congress to pass the Lymphedema Treatment Act to provide Medicare coverage formedically necessary treatments. In the pages of this booklet, you will meet over two hundred champions who live with lymphatic disease andare setting a course for change. We ask you to join them.Sincerely,William Repicci Kathy Bates LE&RN President & CEONational SpokespersonAN AMERICAN TRAGEDY 3'