Lymphedema news Personal

2016 Walk to Fight Lymphedema and Lymphatic Diseases: Bridging the gap between hope and action

Walking across the Brooklyn Bridge to raise funds and awareness for lymphatic diseases.

The Brooklyn Bridge was peppered with bright shocks of blue on Saturday, September 17th, as crowds of people in blue shirts walked round-trip across the bridge to raise awareness of lymphedema and lymphatic diseases.

The 7th annual New York Walk to Fight Lymphedema and Lymphatic Diseases was organized by the Lymphatic Education & Research Network (LE&RN) and its generous sponsors. Beginning in Cadman Plaza Park in Brooklyn, the walk kicked off with speeches by LE&RN executive director William Repicci, New York State Senator Martin Golden, and New York State Assemblymember Linda Rosenthal, and featured New York State LE&RN Chapter Chair Jennifer Looby as the keynote speaker. There were also recorded messages from LE&RN spokesperson and Academy Award winner Kathy Bates as well as Honorary LE&RN Board Member and actor Steve Guttenberg about their personal connections to lymphedema and why the cause is so meaningful to them.

Before the walk got started, awards were given to honor exceptional advocates of lymphatic research: the Business Leadership Award to Cerini & Associates; the Impact Award to BSN medical; the Research Advocate Award to Felicitie Daftuar; and the New York Youth Ambassador Award to six-year-old Nicholas Hernandez for his fundraising and advocacy efforts. Congratulations to all!!

“Unity is strength”

It could not have been a more beautiful day in Brooklyn: the sun was shining, the air was crisp, and the energy at the walk was absolutely buzzing with excitement.

Seeing so many people gathered for the cause of lymphedema and lymphatic diseases was really an uplifting experience. Usually my lymphedema has me feeling disconnected and alone when I’m around large groups of people—I’m self-conscious or embarrassed, praying no one notices my leg—but there I felt a sense of comfort. I felt proud, too, because it reminded me of how amazing the lymphedema community and its advocates are!

Being around all these excited lymphedema people and their supportive friends and family was inspiring, although what really affected me was hearing from the young advocates and their parents. In addition to Nicholas Hernandez, past youth ambassador honorees Connor Looby and Emma Detlefsen were present at the walk and acknowledged on stage for their continued advocacy work.

I got teary-eyed when Connor’s mother Jennifer (the New York LE&RN Chapter Chair) gave an emotional speech about what it means to be in a “lymphatic family” and how important it is to keep fighting for awareness and medical advances. A physical therapist herself, Jennifer shared how she became a certified lymphedema therapist in order to treat her son and better understand his rare lymphatic disorder. With her heroes Connor and Emma standing beside her, she issued a call to action for the lymphatic community to demand funding and research so that a cure can be found.

Jennifer closed the speech with a poignant quote by the late Mattie Stepanek: “Unity is strength. When there is teamwork and collaboration, wonderful things can be achieved.”

These kids, though… they’re something else. I was so impressed by Nicholas, Emma, and Connor: not only are they living with chronic medical conditions, but they’re also standing up and speaking out, demanding (and making!) changes. They’re amazing, really and truly.

It goes without saying that all children living with lymphedema and lymphatic diseases are incredible, mighty little heroes. Sometimes just the act of living with something like this is an exercise in awareness and advocacy in itself: every time they put on their garments, they’re putting on a superhero cape.

My personal takeaway from the walk was that our community really puts in some serious footwork for awareness, both literally and figuratively! We as patients are our own best advocates, but even advocates need advocates: our family members, friends, doctors, therapists, researchers, nurses… they uplift us, and collectively our voices are getting louder. We’re being heard, and more than that, we’re being listened to.

Last week we walked the Brooklyn Bridge from Brooklyn to Manhattan and back again; we also bridged the gap between hope and action. Let’s continue making that walk, together.

Click the photos to enlarge them:

“To win a fight, you first need to join it.”

It’s an unfortunate reality that lymphatic diseases often go undiagnosed and untreated, and that research is underfunded; however, LE&RN and organizations like it are working hard to change that.

LE&RN does a lot of amazing things in the campaign to fight lymphedema and lymphatic diseases: they offer accessible online symposiums with leading authorities in the field; scholarships for lymphedema therapists; research fellowship awards; a patient registry and tissue bank; the world’s only peer review lymphatic journal; NIH collaboration and funding initiatives; fundraisers, advocacy, and activism opportunities; and much, much more.

But they can’t do all of this alone: they need our support to help ensure that their incredible education, research, and advocacy efforts continue! For as little as $5 a month, you can join alongside LE&RN in the fight against lymphedema and lymphatic diseases.

I became a supporting member because I didn’t want anyone to have to wait fourteen years for a diagnosis like I did. Five bucks a month—equivalent to a cup of coffee—for the chance that my experience of delayed diagnosis and treatment won’t have to be someone else’s? Worth it.

For more information on becoming a supporting member of LE&RN, click here.

1 comment on “2016 Walk to Fight Lymphedema and Lymphatic Diseases: Bridging the gap between hope and action

  1. Pingback: Living with Intention: (Belated) New Year’s Resolutions for Lymphies – The Lymphie Life

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