One of the resolution sponsors was the head of New York’s lower house, or Assembly, Fred W. Thiele Jr., whose daughter Josephine has lupus.
The resolution builds on the Lupus Agencies of New York State’s efforts to increase awareness of lupus, to educate the public about the disease and to promote research.
The Lupus Agencies federation is an umbrella group that includes the Lupus and Allied Diseases Association, Lupus Alliance of Long Island/Queens, Lupus Alliance of Upstate New York, Lupus Foundation of America, Lupus Friends & Family Foundation, and Lupus Research Alliance.
The federation’s Annual Lupus Awareness Day was on May 3 at the State Capitol in Albany. The disease is estimated to affect 105,400 New Yorkers.
The purpose of the awareness day is to spread the word about lupus among politicians, state agency officials, healthcare professionals and the public. The long-term goal is to advance research to better diagnose, treat and, ultimately, cure lupus.
“We applaud Senator Joseph Griffo as the Prime Senate Sponsor and Assemblyman Fred W. Thiele Jr. as the Prime Assembly Sponsor of the Lupus Resolution and all of our legislative champions who passed this important resolution for the Ninth Annual Lupus Awareness Month in New York State. We are excited that Lupus continues to receive the recognition it deserves,” Kathleen A. Arntsen, a spokesperson for the federation, said in a release provided to Lupus News Today.
“The more we can get people talking about lupus to understand the crippling effects it can have on the lives of our people, the more momentum we can create toward ultimately finding a cure one day,” Griffo said. “By encouraging public awareness and support for this important research, I am hopeful that we will achieve the kind of effective treatment that can help bring long-awaited relief and comfort to those living with lupus, and their families.”
Lupus is a chronic autoimmune disease. Ninety percent of those who have it are women, and it is two to three times more prevalent in women of color than in women overall.
Thiele said there needs to be more public awareness of lupus. “Among Americans ages 18-34, 72% of those polled have either not heard about lupus or know little or nothing about lupus beyond the name,” he said.
“It is estimated that lupus affects 1.5 million Americans. My daughter, Josephine, is one of those 1.5 million,” Thiele said. “She recently finished graduate school at Boston University and will be pursuing a career in the field of health and nutrition at GMHC (formerly known as the Gay Men’s Health Crisis) in New York City. She is proof that with a proper diagnosis and treatment and armed with the necessary information, that one can live a full and successful life despite this illness.”