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The Lupus Foundation Of America Turns New York's Attention To A 'Cruel Mystery' That Affects Millions Of Americans

May is Lupus Awareness Month; Walk, Purple Bus with Interactive Experience, and Education Events Taking Place in New York City


News provided by

Lupus Foundation of America

May 14, 2013, 12:34 ET

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NEW YORK, May 14, 2013 /PRNewswire-USNewswire/ -- In recognition of Lupus Awareness Month, the Lupus Foundation of America is hosting a number of programs throughout New York City where New Yorkers can join the efforts to raise awareness of lupus and solve the cruel mystery of the disease.  Lupus is a mysterious and devastating autoimmune disease that ravages different parts of the body and has no known cause or cure. 

(Logo: http://photos.prnewswire.com/prnh/20121113/DC11393LOGO)

There are many ways residents can get involved, learn about lupus, and support those who suffer from its brutal impact. They include New York's annual Walk to End Lupus NowTM event, and education programs for physicians and people with lupus and their families.  Also, New Yorkers are invited to hop on board the Lupus Foundation of America's 45-foot purple bus that has many interactive experiences to learn about lupus.  The bus, part of the Foundation's Help Us Solve the Cruel Mysteryä National Tour, will make several stops throughout New York City.  Residents can learn more about these programs and register online by visiting lupus.org/newyork.

New York City events taking place during May include:

  • The Help Us Solve the Cruel Mystery™ National Tour (May 16-18): Visit the purple bus, learn about the signs and symptoms of lupus and what it is like to live with the disease through interactive exhibits.  Then take action to support those affected by lupus by signing a petition that asks Congress to fund more lupus research efforts.  The tour bus will be open to the public Thursday, May 16th through Saturday, May 18th at the following locations:

Thursday, May 16

9:00 am – 5:00 pm: Madison Square Garden/Penn Station
(33rd Street between 7th and 8th Avenues, New York, NY)

Friday, May 17

9:00 am – 5:00 pm: Times Square
(43rd Street at 7th Ave., New York)

5:00 pm – 8:00 pm: Yankee Stadium
(1 E 161st St.; Bronx, NY)

Saturday, May 18

7:00 am – 1:00 pm: South Street Seaport, New York, NY

3:00 pm – 5:00 pm: Westin New York Grand Central
(212 E 42nd St, New York, NY)

  • Clinical Advances in Lupus: Practice Pearls™ (May 18; 7:30 am – 12:00 pm): There will be a continuing medical education program for physicians and medical professionals at the Westin New York Grand Central (212 E 42nd St.). 
  • Lupus: Living and Learning™ (May 18; 1 pm - 4 pm): Also at the Westin New York Grand Central, people with lupus and their families can attend an education event and learn from experts about the latest lupus research, treatments, and how to live better with lupus.  
  • Put on Purple Day (May 17): New York will join lupus supporters across the nation to wear purple, the official color for lupus awareness -- and tell people why they are showing their support for all people affected by lupus.
  • Walk To End Lupus Now™ (May 18; 9 am check-in, 10 am walk begins): Thousands of New Yorkers will walk to raise money for lupus research, increase awareness of the disease, and rally public support for those impacted by lupus.  The walk is supported by Saks Fifth Avenue, Hot 97 Radio and Allsup Life Reclaimed. 
  • Saks Fifth Avenue Window Display (May 8-22): The flagship Saks Fifth Avenue store (611 Fifth Avenue) will prominently feature lupus information and encourage people to help raise awareness of the disease.

Awareness and understanding of lupus is essential to improve the diagnosis and treatment of the disease and find a cure.  However, currently lupus awareness is painstakingly low.  A recent survey found that seventy-two percent of Americans between the ages of 18 and 34 -- those most at risk for lupus -- have either not heard about lupus at all or know little or nothing about lupus beyond the name

"Lupus is one of the most misunderstood disease there is, and research to better understand lupus and discover effective treatments is greatly underfunded relative to the disease's scope and devastation" explains Sandra C. Raymond, President and CEO of the Lupus Foundation of America. "We need greater awareness, we need more funding – we need a cure.  We are calling on all New York residents and all Americans this May to join us in the fight against this disease that can rob people of the best years of their lives."

"My lupus diagnosis was a huge blow to my sense of self," explains Sara Lev, a New York City resident who has lupus. "The disease forced me to reevaluate my career, slow down and adjust my lifestyle to stay healthy. I live everyday with the uncertainty of what's to come – how the disease may impact my body and my quality of life. Knowledge is power, though, and I encourage my fellow New Yorkers to come out to these great events, learn more and join me in helping fight this cruel and devastating disease."

About Lupus

Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body.  It is difficult to diagnose, hard to live with and a challenge to treat.  Lupus is a cruel mystery because it is hidden from view and undefined, has a range of symptoms, strikes without warning, and has no known cause and no known cure.  Its health effects can range from a skin rash to a heart attack.  Lupus is debilitating and destructive and can be fatal, yet research on lupus has not kept pace with research for other diseases of similar scope and devastation. 

About the Lupus Foundation of America

The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world's cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, the Foundation leads the fight to improve the quality of life for all people affected by lupus. Learn more about the Lupus Foundation of America at lupus.org. For the latest news and updates, follow us on Twitter and Facebook.

SOURCE Lupus Foundation of America

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