In May of 2017, LE&RN President & CEO William Repicci addressed a group of passionate and active LE&RN supporters. He challenged them, and the community, to think bigger and to allow for the biggest of hopes -- of bringing LE and LD to the forefront of the national and world stage, and curing these diseases.
post by William Repicci, President & CEO of LE&RN
In the above video, I am addressing the top fundraisers of the 2017 California Run/Walk to Fight Lymphedema & Lymphatic Diseases at a celebratory dinner the night before the event hosted by Preimier National Sponsor BSN medical and LE&RN Spokesperson Kathy Bates. I asked this incredibly engaged and effective group of activists: What is stopping us from making LE and LD national priorities? Below are some of my thoughts, which I shared with them and which I share here with you now.
1. We can recognize how far we have come and see who has joined the fight. We are no longer invisible. I say that with confidence. Over the past few years, LE&RN's Honorary Board has expanded to include Spokesperson Kathy Bates, actor Steve Guttenberg, Olympian Sarah Hughes, and many others. Celebrities like Billy Bob Thornton have attended LE&RN events. Their presence has brought LE&RN to the attention of millions.
2. The public, the press, the medical community, and sometimes even patients have difficulty remembering the names of these diseaes. People know MS. They know AIDS and ALS. And, thanks to tremendous marketing by drug companies, they now know ED, RLS, and OIC (Erectile Dysfunction, Restless Leg Syndrome, and Opiod-Induced Consitpation). We must take a lesson from these multi-million dollar marketing efforts and begin using the acronyms LE and LD. Having simple and memorable acronyms stick is an important part of getting and retaining the attention we need.
3. We must expand our expectations and our hopes. In March of 2016, LE&RN scored a tremendous victory. After working with LE&RN and meeting with LE&RN representatives in Washington, U.S. Senator Chuck Schumer submitted a request that $70 million in funding be appropriated to the Office of the Director at NIH to support research relevant to the lymphatic system. I was not surprised that, following the announcement of this news, many LE&RN supporters reached out to me and to our office. We were surprised by what we heard. We heard patients and loved ones say we were thinking too big. There would never, they insisted, be a cure for LE or LD in their lifetimes, if ever. They implored us to focus our energies on insurance payment issues. I cannot, and will not, accept that tremendous medical breakthroughs are impossible. I know they are because I saw AIDS move from a certain death sentence to a treatable and manageable disease. This happened because an embattled community, against tremendous odds, refused to take "no" for an answer. And I know because I speak with LE&RN-funded researchers who tell me that the answers are out there, but we need the national will to find them.
4. We must begin being honest about LE and LD. I travel around the country and around the world, raising awareness and funds for LE&RN. One of the most frustrating responses I receive when I ask someone to join this fight is "Well, no one actually dies of lymphedema." First, people do die from complications of lymphedema, on a regular basis, whether from cellulitis, weight gain that has put stress on the heart, or a compromised immune system. And second, it is a horrible disease that is debilitating, requires life-long treatment, and completely compromises quality of life. Too often, I hear patients downplay the severity of these diseases. We must begin to speak out and then find the courage to demand that the nation and the world make LE and LD national priorities.
President & CEO, LE&RN
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