Writer: Mitchell Acks
We know someone who has Lupus. She was very healthy and fit but the disease has affected her.
Lupus is a chronic, complex autoimmune disease that affects millions of people worldwide. More than 90% of lupus sufferers are women, mostly young women between the ages of 15 to 44. Women of color are especially at risk. This disease disproportionally affects African American, Hispanic, Native American, and Asian Women like 2to 3 times.
It is a leading cause of heart disease, kidney disease and stroke among young women.
In lupus, the immune system, which is designed to protect against infection, creates antibodies that attack the body's own tissues and organs – the kidneys, brain, heart, lungs, blood, skin, and joints. The symptoms are unpredictable that can range from fatigue, severe joint and muscle pain to organ failure and even death.
One third of people with lupus are on work disability and by 15 years after diagnosis, 51% have some working.
Lupus is often overlooked or misdiagnosed with the actual number of people with the disease remains unknown.
No two cases of lupus are the same. There is no laboratory test that can definitely identify lupus. However, early detection and treatment, lessens the progression and severity of the disease.
There is no cure and cause of lupus is unknown. The existing treatment options are few with many dangerous and toxic side effects. There is one drug geared for lupus that has been approved by the U.S. Food and Drug Administration.
The Lupus Research Alliance is there for new treatments, prevent disease progression, and find a cure.
The 9th annual Lupus Research Alliance Lupus Handbag Luncheon & Silent Auction honored two stand-out supporters to the lupus cause: world-leading sports brand PUMA and IBM Associate Partner Veronica Vargas was held on May 22, 2018 at the Plaza Hotel.
More than 300 prominent women and men from New York's fashion, society, entertainment, publishing, philanthropic and lupus communities were in attendance. Many members of the Lupus Research Alliance leadership were actively involved in planning the luncheon including Jennie DeScherer, Carol Weisman and Teri Wilford Wood. Noted philanthropists and socialites in attendance included Cindy Secunda, Arlyn Gardner and Bonnie Englebardt Lautenberg.
Supporters from the fashion industry included: Elizabeth Schweitzer Miller, Director, Merchandise Planning & Allocation at Bloomingdale's; Consultant and former Bloomingdale's senior vice president of public relations, special events and corporate philanthropy, Anne Keating; and Karen Giberson, President Accessories Council. Dedicated Lupus Research Alliance supporter and fashion industry leader Mary Belle was a highly active participant in the Luncheon Committee.
Past Women of Achievement served as this year's honorary luncheon co-chairs: Claudia Cividino, CEO of Bally Americas; Desiree Gruber, CEO of Full Picture and Founder of Project Runway; Brett Heyman, Founder of fashion company Edie Parker; and Former First Lady of New York State and accomplished author Matilda Raffa Cuomo
There was a silent auction featured 75 handbags donated by top designers, and a first-ever drawing for "the" Gucci handbag generated thousands in contributions.
PUMA was named "Corporate Visionary Partner" in appreciation for the company's innovative marketing partnership with Selena Gomez that boosted global visibility for lupus and generated a significant contribution for the Lupus Research Alliance. This spring the company launched Selena's design, the Phenom Lux sneaker sporting her signature anklet chain that sold out in hours and raised $100,000 for lupus research.
PUMA Global Entertainment Marketing and Partnerships Head Tracy Pendleton accepted the award on the company's behalf. Ms. Pendleton commented, "It's always a goal to find partners who feel passionate about important causes, and one of the goals in signing Selena Gomez as a brand ambassador was to put together meaningful ways to provide awareness and support for the Lupus Research Alliance, a cause near and dear to Selena's heart."
Veronica Vargas Lupo received the 2018 "Woman of Achievement Award" for her long-time dedication to fulfilling the organization's mission. She joined the organization in 2011 and helped build the Young Leaders group. In years past, Ms. Lupo has helped in many capacities at the luncheon at which she is now honored today. In addition to her fund raising role, she serves as a mentor to young women diagnosed with lupus and draws on her own experiences to inspire, teach and support.
Ms. Vargas Lupo offered this advice to those diagnosed with the disease: "Lupus is not a life sentence. Life does not stop at diagnosis. It is hard, it has its ups and downs, it may be lonely at times. But a life with lupus can be lived to the fullest, filled with joy, laughter, kids of your own, a career and anything you can dream of."
The Lupus Research Alliance is the largest private funder of lupus research, united to free the world from lupus by harnessing the power of innovative science to make a difference for people living with the prototypical autoimmune disease. Established in 2016 – from the merger of the Alliance for Lupus Research, the Lupus Research Institute, and the S.L.E. Foundation – the Lupus Research Alliance was created to improve treatments for lupus while advancing toward a cure.
They have spent over $200 Million Dollars in support of novel research with nearly 500 grants. All the funds goes towards research due to Lupus Research Alliance Board of Directors that covers all the administrative and operating costs.
They are the only voluntary lupus health organization to organize and fund a clinical trials network – the Lupus Clinical Investigators Network, known as LuCIN – to conduct multi-center trials at 58 of the most prestigious North American-based academic research centers.
The Lupus Research Alliance is also a national sponsor of AWARE for All, a free program that educates and empowers the public to consider participating in clinical trials. They provide the only website dedicated to lupus clinical research – LupusTrials.org – where you can search for and learn about trials in your area.
The Dr. William E. Paul Distinguished Innovator Award in Lupus and Autoimmunity, only privately funded lupus awards of this scale, the $1 million award challenges exceptional scientists to uncover the root causes of lupus.
Under their Target Identification in Lupus (TIL) grant program, investigators receive a three-year, up-to-$600,000 award, to remove the barriers to new treatments.
The Novel Research Grant program provides early-stage support with $300,000 grants over three years, used for investigations into the fundamental mechanisms of lupus and its complications, and the explorations of novel targets, pathways, and technologies.
The organization has been able to convince Congress to provide millions in funding to advance lupus research and appropriate $10 million to alleviate racial disparities among under served populations. Most recently, our efforts resulted in an additional $3 billion for biomedical research funded by the National Institutes of Health as well as $5 million to continue the Lupus Research Program at the Department of Defense we helped establish in 2017.
More about the organization can be found at: http://www.lupusresearch.org
Photo credit: Ed Lefkowitz
Photo credit: Ed Lefkowitz