Lupus Foundation of America, Mid South Chapter
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Mission Statement
The Lupus Foundation of America, Mid-South Chapter, is dedicated to improving the quality of life for all people affected by lupus through programs of research, education and advocacy. In our community, this commitment translates to efforts to support patients as soon as possible after a lupus diagnosis is suspected. Through our relationships with providers and other support organizations, we connect with patients and families through community-building, from traditional support groups to wellness groups that emphasize patient control and self-advocacy, from patient education available by phone to in-person consultations with trained professionals to help the patient and family navigate the constant hurdles lupus places before them.
About This Cause
Our Mission: The Lupus Foundation of America, Mid-South Chapter, is dedicated to improving the quality of life for all people affected by lupus through programs of research, education and advocacy. In our community, this commitment translates to efforts to support patients as soon as possible after a lupus diagnosis is suspected. Through our relationships with providers and other support organizations, we connect with patients and families through community-building, from traditional support groups to wellness groups that emphasize patient control and self-advocacy, from patient education available by phone to in-person consultations with trained professionals to help the patient and family navigate the constant hurdles lupus places before them. Our Background: In 1977, a small group of women with lupus began meeting in private homes as a support to one another. In 1984, the group was recognized as a chapter by the Lupus Foundation of America, became incorporated as a Tennessee charitable corporation and received the non-profit 501(c)(3) status. In 32 years the Lupus Foundation of America, Mid-South Chapter has grown from an informal group to a regional force in lupus education and advocacy. The chapter has moved from a budget of under $5,000, to over $350,000. We have a strong, professional 14-member governing board that is geographically, professionally and ethnically diverse. To fully grasp the tremendous need for our Chapter to grow and succeed, one must understand a bit about lupus. -- Lupus is a chronic disease that affects over 1.5 million Americans, including 85,000 in our service area of Alabama, Kentucky and Tennessee. -- In lupus, a patient’s immune system mistakes healthy organs and tissues as diseased intruders, causing inflammation, pain, and increased incidence of other serious conditions. -- Lupus is difficult to diagnose because its symptoms can occur in other diseases and often present as common ailments like fatigue, joint pain and rash. -- Nine out of ten patients are female, and nowhere is lupus’ impact felt more strongly than in minority women: six out of ten who suffer from lupus are African-American women. -- Minority women are usually younger at diagnosis and impacted more severely by lupus. Factoring in socioeconomic and educational factors that often disproportionately affect minorities, lupus is particularly cruel in these families and communities. -- Hormones, genetics and environmental factors all play roles in who develops lupus. -- Lupus is a cruel disease, unpredictable and life-changing. While some lupus patients can continue a normal lifestyle, others are completely debilitated by symptoms and become unable to work or socialize, and many lose their lives. -- Lupus is incurable and very few treatments exist, all of which may cause side effects that can be as frustrating and life-changing as the disease itself. Our Impact: We represent over 85,000 lupus survivors (35,000 in TN, 27,000 in AL and 24,000 in KY). Accomplishments: -- Designated the first-ever “Chapter of Excellence” by the Lupus Foundation of America for our attainment of national standards in governance, operations, fundraising and services. -- Experienced tremendous growth in our reach, with a database of over 50,000 advocates, including 300 magazine subscribers, 17,000 newsletter subscribers, 1,290 Twitter followers, and over 5,000 total Facebook followers. -- Over 200 individuals participate regularly in our support groups, and we had 3,500 people participate in our Walks to End Lupus Now in 2016. -- In February 2016, hosted Lupus Day on the Hill in Tennessee. The TN Senate passed a resolution recognizing May as “Lupus Awareness Month” in TN, and we participated in passage of legislation to create a study committee to determine the impact of lupus on Tennessee’s residents, health systems and economy. We are planning advocacy days in the capitols of all three states we cover plus participation in DC in June in the LFA's national Lupus Advocacy Summit. -- Involved 100+ participants in “Moves for Lupus," where patients set their own exercise goals based on physician advice. Mid-year surveys show over 90% have increased their physical activity and 3/4 have improvement in symptoms. Our Goals: -- Expand and multiply our outreach efforts, focusing on broadening reach into rural and urban areas, diverse populations and newly diagnosed and long-term survivors; -- Expand and enhance services and delivery through “Living with Lupus” wellness groups with evidence-based curriculum for education and emotional support and "Lupus and You" psychosocial content and one-on-one sessions with trained social workers. -- Continue to implement new opportunities for fundraising (grants, corporate philanthropy) and maximize effectiveness of current funding streams (memberships, individual giving, workplace giving, peer-to-peer fundraising/events, memorial/honorary gifts and third party events); seek leadership commitment from across our service area, focusing on individuals with diverse skill sets and professional/personal connections that can move our Chapter forward and ensure succession. Our Needs: We believe that creative programs to deliver evidence-based services to patients and families are key to changing lives of lupus patients. To execute fully, we need: -- Funding to fully empower volunteer support group facilitators to serve, providing extended training, innovative materials and baseline office equipment ($750-1000 for each group for a total of $5,000 - $7,500 for target areas) -- Funding to create resource centers near the major medical hubs where most lupus patients are served ($5,000 for each center; Nashville would serve as Middle Tennessee's location). -- Funding to employ a part-time social work professional to assist us with fully developing the "Lupus and You" program and providing one-on-one sessions to individuals needing our assistance (total of $40,000). Other ways to donate, support, or volunteer -- Individual/Organization Giving: Ninety cents of every dollar remains in our service area to fund our services and outreach, with the remainder pooling with other chapters to make possible groundbreaking research funded by the Lupus Foundation of America. -- Workplace Giving: We participate in Community Health Charities, Benevity, United Way and several other workplace giving initiatives. Contact your human resources department for more information. We love visiting with companies and telling the inspiring stories of our patients; contact us at info@lupusmidsouth.org to schedule a speaker. -- Walks to End Lupus Now: Our primary awareness, fundraising and community-building activity is the Walk to End Lupus Now, held in six communities of our service area (Huntsville and Birmingham, Alabama; Louisville and Lexington, Kentucky; Nashville and Memphis, Tennessee) Individuals or teams may participate, and we encourage participants to put their own stamp on fundraising by holding events to benefit the Chapter. These Walks are possible through dedicated and skilled volunteers, who plan and execute the days activities. Our web site, lupusmidsouth.org, includes more information about our Walks and links to sign up to participate or volunteer. -- Donations of Goods or Services We enthusiastically accept in-kind donations of goods and services, which help us defray the costs of our events and activities. -- Program-Related Activity Volunteers Volunteer support group leaders are a key part of our service model; we have more than 50 trained facilitators hosting over 20 support groups each month. We also participate in many health fairs and community events that benefit from volunteers helping.