Jan. 10, 2017

10 Years of the Walk to End Lupus Now NYC

On Saturday, May 6, 2017, we will commemorate 10 years of the Walk to End Lupus™ Now in New York City!  The Walk increases awareness of this cruel and mysterious disease while raising funds for the Lupus Foundation of America.  Since 2008, New York City Walk participants have raised over $3.25 million and walked a combined total of nearly 100,000 miles to fund education & support programs, advocacy initiatives, and research to improve the quality of life of the nearly 1.5 million people living with lupus in the United States.

Four of the founding members have worked on the Walk Planning Committee every year:  Fran Tsimoyianis, captain of Team Alex; Lynnore Thames, captain of Lynnore’s Brooklyn Walkers; Rasheda Thomas, captain of Indigo Blu; and Sara Katz, captain of Team Michael.  We asked these dedicated and passionate volunteers for their thoughts on this important milestone.

Why did you first get involved with the Lupus Foundation of America?
Lynnore:
  I first got involved because the Foundation appeared to have the best resources, information, and support for people living with lupus.  I wanted to connect with the larger community of people whose lives were impacted by lupus so that I could improve my overall quality of living, develop connections with others living with lupus, and also be of assistance to those who needed greater support than me.
Sara:  I first became involved with the LFA in 2006, after my brother Michael Barlin passed away from complications from lupus.

How did the group come together to start the first Walk to End Lupus Now in New York City?
Lynnore:  The Foundation petitioned NYC residents who were already on the mailing list about their interest in a Walk and being involved.  I’ve worked with several non-profits, and I knew that the Walk would be a great opportunity to raise funds and bring awareness to the disease and the people affected by it.
Rasheda:  The group came together organically.  We were four women who were affected by Lupus in some form or fashion who had the same goal in mind, bringing awareness and finding a cure.

Describe the experience of the first walk in New York City.
Fran:  It was very grassroots.  I remember my sisters doing registration, getting my ex-husband to store and then transport walk materials, snacks, water, etc.  Reaching out to family and friends asking them to join Team Alex and donate to the Walk.  Lots of phone calls and meetings – it was exhausting but exhilarating.
Rasheda:  For three years prior to New York City having a walk, I would drive close to 2 hours to West Hartford, CT to walk every year.  The Connecticut Chapter welcomed me with open arms and always made me feel right at home, so walking in New York, I didn’t know what to expect.  I remember walking up to where everyone was gathering, and a wave of emotions came over me.  I was so proud to be in my city and to see others with the same passion in their eyes, and all I could do was cry - tears of joy - because I knew that this was going to be something big.  I knew that I had to be a part of it.

Reflecting on the past nine years, what makes you most proud?  What is your favorite moment?
Sara:  Every year it is more amazing to see how much the Walk has grown. It means so much to me that we are making a difference in the lives of those affected by lupus, not only through groundbreaking research, but also by education and assistance. There is so much excitement in the air and everyone is pumped!
Lynnore:  I am proud to have brought awareness and attention about the disease to so many people and to be a resource to those living with lupus.  I’ve had countless encounters at work and situations where friends and family have approached me because they know of my involvement with the Walk and have confided that they or someone they know has lupus and have asked about my story and how I can help them as they begin their journey.   This experience has been priceless.

What is your hope for the future of this fundraiser?
Fran:  That we become a $1,000,000 + Walk annually and that we get the proper recognition for this debilitating and potentially fatal disease.
Rasheda:  My hope is that we find a CURE.  My hope is that when you turn on the television, every other commercial is about lupus and the strides we are making to tackle this illness.  My hope is that we grow so big that you can’t help but to know who we are.

Why is supporting the Lupus Foundation important to you?
Fran:  They give me a voice.  They are out there every day fighting for children, adults, and caregivers.  The LFA is our advocate.
Sara:  I support the LFA in honor of my brother Michael Barlin who died from this terrible disease in 2006. He was very sick for ten years, and it affected him terribly. Every dollar that Team Michael raises in the annual NYC Lupus Walk goes toward the Michael Jon Barlin Pediatric Research Fund, which focuses on pediatric research to find a cure.

 

You can get involved and help end lupus now.  Register for the Walk to End Lupus Now New York City at www.walktoendlupusnow.org/newyork.

Have a favorite walk moment to share or your own reflections on the Walk to End Lupus Now?  Email us your thoughts and a photo and we may highlight you on our Facebook page.  Email .(JavaScript must be enabled to view this email address)