Special to the Philanthropy Journal
By Christine John-Fuller
Lupus. It’s a complex disease that’s hard to define. It strikes without warning. It affects each person differently. It has no known cause or cure. In short, it’s the cruel mystery.
Lupus is a chronic autoimmune disease that can damage any organ in the body (skin, joints, and/or organs inside the body) and can cause life-threatening consequences. 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 remains underfunded relative to its scope and devastation.
This is why the Lupus Foundation of America, North Carolina Chapter (LFANC) is committed to helping solve the cruel mystery of this disease that impacts an estimated 45,000 people in North Carolina and approximately 1.5 million Americans.
Serving all 100 counties in North Carolina, the LFANC is dedicated to improving the quality of life for all people affected by lupus through programs of research, education and advocacy.
The LFANC is part of the Lupus Foundation of America (LFA) and the national force devoted to solving the cruel mystery of lupus while providing caring support to those who suffer from its brutal impact.
With the help of informed volunteers, lupus medical experts, and committed and caring supporters, the LFANC does the following for the lupus community: supports research and conducts education programs so everyone affected by lupus can have an improved quality of life; provides information to ensure people with lupus and their families get answers and health professionals know about new means to diagnose and manage the disease; and conducts activities to increase awareness of lupus, rally public support for those who are affected by lupus, and advocate on their behalf.
The LFANC has pioneered several initiatives to further its commitment in raising awareness about lupus and in providing programs of research, education and advocacy:
- Put On Purple Day: In 2011, the chapter founded Put On Purple Day. It has since become a national campaign with tens of thousands of participants who wear purple – the official color of lupus awareness – one day in May to help raise awareness and rally public support to solve the cruel mystery of lupus.
- NC Lupus Summit: In addition to hosting a myriad of events, including LFA’s signature Walk To End Lupus Now™ (there are four throughout North Carolina), support groups, educational seminars and teleconferences, the LFANC also hosts the NC Lupus Summit. Now in its 15th year, the Annual NC Lupus Summit brings together hundreds of lupus patients, caregivers, advocates and medical professionals to the day-long event that rotates annually between markets in North Carolina to reach more people. This year’s NC Lupus Summit will be held on Saturday, Oct. 24 in Charlotte. The event is open to the public, but pre-registration is required by Friday, Oct. 16. The cost is $20 per person and includes lunch and a special gift. Ticket scholarships are available. A special hotel rate is available for out-of-town attendees. For more information or to register, call toll-free to 877-849-8271, ext. 1 or visit http://www.lupus.org/northcarolina/events/entry/15th-annual-nc-lupus-summit.
- In-Home Education: The LFANC was the first LFA chapter to start “Ask The Experts,” a series of live educational teleconferences and pre-recorded webcasts on a variety of topics designed to provide people with important information about living with lupus. So no matter where people are located throughout the state, they can have access to free lupus education opportunities from the comfort of home.
- Medical Community Partnerships: The LFANC has also built strong relationships with the lupus medical community, which plays an integral role in advocacy efforts, research and education throughout the state. Several media experts have been integral in helping the chapter create its first ever statewide Medical Scientific Advisory Council and in supporting the LFANC’s efforts to create and introduce physician referral slips.
Christine John-Fuller is the President and CEO of the Lupus Foundation of America, North Carolina Chapter. For more information about lupus or the LFANC, visit www.lupusnc.org or call (877) 849-8271.
