Mission: The Lupus Foundation of America, Connecticut Chapter is dedicated to finding the causes of and cure for lupus and providing support and services to all people affected by lupus.
Background: The Lupus Foundation of America, Connecticut Chapter was established in May 1973 when there were only a few individual chapters around the country. At that time, the Lupus Foundation of America had not been established as a national organization.
We provide support groups for adults with lupus in West Hartford and Milford and recently began to collaborate with Connecticut Children’s Medical Center on a support group for teens. In addition, the chapter participates in health fairs and hands out literature. The chapter is primarily funded by individuals, special events and corporate grants.
Ninety percent of individuals diagnosed are women. People of color — Hispanics, Latinos, African Americans, Asians and Native Americans — are three times more likely to have lupus, a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood and kidneys. Lupus affects all socio-economic groups. In Connecticut alone, there are more than 17,000 individuals with lupus and nationwide there are 1.5 million. Those are the diagnosed cases. Lupus annually costs the nation an estimated $31.4 billion in direct and indirect costs. A recent study found the average annual cost per person with lupus, between the ages of 18 and 65, was $20,924. Diagnosis can take four or more years and visits to three or more physicians. Late diagnosis and delayed treatment contribute to poor outcomes and increased morbidity and mortality.
Major Fundraiser: The chapter holds two walks a year: Walk for Lupus Now 2009, May 31 in Blue Back Square, West Hartford; and on Sept. 13 in New Haven. All proceeds from the walks go towards providing support for individuals with lupus as well as helping to fund research to help find a cure for lupus.
Volunteer Needs: Volunteers are needed to help on the walkathons as well as doing data entry at the chapter.
Leadership:
Lisa Sartorius, CEO and president;
Ron Marek, chairman of the board;
Brian Nichols, vice chairman;
Mike Ganino, treasurer;
Pauline Brignano, immediate past chair;
Marilyn Sousa, founder and board member.
Contact information:
Lupus Foundation of America, Connecticut Chapter
97 South St.
West Hartford CT 06110
(860) 953-0387
www.lupusct.org
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Lisa Sartorius is president and CEO of Lupus Foundation of America, Connecticut Chapter
