Lupus Organizations Advocate at State Capitol for Lupus Awareness Day

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by Ines Martins, PhD |

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Representatives of Lupus Agencies of New York State, the S.L.E. Lupus Foundation and Lupus Research Institute recently joined together at the New York State Capitol to raise awareness about the disease on Annual Lupus Awareness Day, last Wednesday, May 13th. The state of New York is celebrating May as Lupus Awareness Month, noting that among the 1.5 million people that suffer from the disease throughout the country, 105,400 are New Yorkers.

Lupus Awareness Month was approved by the New York State Assembly and Senate after being proposed by Governor Andrew Cuomo. Both lupus organizations in the state and the legislature are joining efforts to increase public awareness of symptoms associated with the disease, as well as its health consequences, and to increase support to education and research, according to a press release from the organizations.

“Lupus is a common illness, and yet most people do not know much about the disease,” stated Assemblyman Anthony Brindisi of Utica. “That is why I support this resolution, and also have sponsored a package of three bills in the State Assembly that would boost public education and outreach, and encourage more research into lupus.  Many people who are suffering from lupus are not aware that they have it, and I am pleased to partner with the Lupus Agencies of New York State to help get more information out about lupus, so that those affected can seek proper treatment.”

State Senator Joseph Griffo explained the motivations behind hosting this celebration day and month, which focuses on possible ways to decrease the burden of lupus patients. “The millions of people worldwide who suffer every day from this crippling autoimmune disease deserve the hope that one day will bring long-awaited relief from their debilitating pain,” said Griffo, for whom the cause is particularly close.

“But the goal of more effectively treating and ultimately curing lupus can only come with more public awareness, more funding support and more medical research, so I am proud to further that effort today by recognizing May as Lupus Awareness Month. My aunt was among those who died from this disease, and it is in her memory that I recognize all of the commendable work the Lupus Agencies of New York State continue to do,” he added.

The charities and organizations associated with the Lupus Agencies of New York State work on improving lupus patients’ quality of life, as well as supporting their families and friends through education, outreach services and by promoting awareness initiatives, advocacy and research. Since there is currently no cure for the disease, increasing the quality of life of patients is key for the management of the disease.

“We applaud Senator Joseph Griffo as the Prime Senate Sponsor of the Lupus Resolution and Assemblyman Anthony Brindisi as the Prime Assembly Sponsor of the Lupus Resolution and all of our legislative champions who passed this important resolution for the Sixth Annual Lupus Awareness Month in New York State,” stated the spokesperson for the Lupus Agencies of New York State Kathleen A. Arntsen. “We are excited that this devastating disease is finally getting the recognition it deserves.”

During Annual Lupus Awareness Day, the organizations made efforts to educate and increase both knowledge and attention of policymakers, state agency officials, health care professionals and the general public of New York for the need to advance scientific investigation into lupus that can hopefully enable diagnosis along with the discovery of safer and more effective treatments, and ultimately a cure.

Since the beginning of the month, lupus organizations are celebrating the Lupus Awareness Month with a series of events, and members of the associations are being invited to join the cause and help raise awareness about the disease. Among the initiatives is the display of a larger-than-life window at Rockefeller Plaza in midtown Manhattan. The installation was designed to emphasize the debilitating outcomes of lupus in the lives of patients, mainly among women in their 20s.