JoAnn Quinn, the Executive Director of the LAA/LIQ explained the Alliance’s mission stating, “Our goal has been and always will be about the people with lupus. Our main focus is about improving the quality of life for those with lupus, and teaching them coping skills, empowering them with hope for tomorrow and providing the much needed shoulder to lean on. To a person with lupus, that is the most important thing, the thing they need most on a day to day basis while trying to learn to live with their disease. We pride ourselves on being there for the individual, while also giving our money to novel worthy research projects that we hope will bring new medications and hopefully someday soon, a cure. “

The statistics on lupus are staggering and climbing. Lupus affects 1 out of every 185 Americans. 44 people everyday are diagnosed with lupus. In over 40 years there has not been a new medication approved for lupus. Armed with these statistics the Lupus Alliance is fighting harder than ever before to reach out to those with lupus who need their assistance, compassion and knowledge.

The programs offered by the Alliance include everything from college scholarships and kids programs to support groups, books and brochures, doctor referral lists and more. Also included in these services is LupusLine, a free peer-to-peer counseling program available to anyone with lupus, 18 years or older. LupusLine counselors, made up of specially trained volunteers who have lupus, speak with callers on an ongoing basis about emotional concerns related to their illness. Another program offered by the Alliance is their Quality of Life grant program designed to help those with lupus who are in financial need. This program is a confidential service that offers up to $500 a year for medical bills, pharmacy costs, utility bills and more. The application is easy and only requires proof of income, lupus diagnosis and residency.

During the year, the Lupus Alliance holds Education Days in their Bellmore office from 9:30 am – 4:00pm. The remaining dates this year are: June 14th, September 6th and November 15th. Education Day, an open forum designed to encourage interactive discussion, is hosted by trained speakers with lupus. The day is geared towards anyone with lupus; whether you are newly diagnosed and need to educate yourself on the ins and outs of the disease, or you have been living with lupus for some time but want to keep up to date on the newest advances, medications and treatments. The meeting can also be an invaluable teaching tool to spouses, children, parents or siblings who need to learn how to care for, cope with and support their loved one with lupus. Questions are encouraged and a light breakfast, lunch and all educational materials are included in the fee of $10 pp for members of the Alliance or $15 pp for non-members. Registration is required by calling the Lupus office.

To fund these programs the Alliance will hold their 15th Anniversary Walk-Along for Lupus on October 19th at Eisenhower Park. This is the first and longest running Lupus walk on Long Island, which raised over $260,000 last year, 90% of which was raised by families and individuals from the area. If you would like to walk, help, or donate please call the office for a walk packet and details. If you would like to participate in any of the above programs, or fill out an application for a grant or scholarship, please call the Lupus Alliance at 1-800-850-9000 or email them at: info@lupusliqueens.org. Suffering with lupus is hard enough; no one should suffer through it alone. Please call today.