We have an incredibly powerful untold story of a disease that needs so much more awareness and support. Lupus is relentless for so many families. We must be equally relentless in our efforts; the stakes are simply too high. Patrick White, our new board chair, pledges to help grow our board to meet this challenge.
As little as 15 years ago, no one spoke of lupus. There was little awareness and understanding of the signs and symptoms. Lupus can be life diminishing and devastating, resulting in great pain and loss for many families. I personally knew very little about lupus 10 years ago when I became the President and CEO of the Georgia Chapter of the Lupus Foundation of America (LFA). We had five board members and very little funds.
I never dreamed lupus would affect my family. Two years later my oldest daughter Cara, at age 19, became sick in college, beginning her autoimmune journey. Today, Cara is struggling with lupus, arthritis, Raynaud’s, Srogrens and fibromyalgia. Four years ago she gave up her dreams of the musical theater career she trained for and returned to Atlanta. This summer, at age 27, Cara is engaged to her 5th grade sweetheart and due to her increased disease activity, started Benlysta, a new lupus infusion treatment and became part-time in her arts and education career she loves.
When we at the LFA celebrated Benylsta’s approval in 2011, the first new lupus drug in over 52 years, I never dreamed my daughter would be a recipient. My family now fights lupus every day, personally and professionally.
Bella Rocchio, age 12, pictured on our cove rof our latest LUPUSGA magazine (click here to download your copy) with Cara, is another extraordinary daughter fighting lupus. Bella’s mother Michele was diagnosed with lupus six years ago when Bella, the oldest of three siblings, was only six. Michele has faced many challenges including leaving the busy Obstetrics and Gynecology practice she loved. Bella is our youngest team captain to date and our number five walker, raising $5,800 in this year’s Walk to End Lupus Now and inspiring all she met. We share this special family’s lupus fight. The Atlanta Walk is still the largest LFA walk in the country and one of the largest walks in Atlanta with 15,000 walkers raising $525,000. Our family Walk teams, raising funds and awareness, are the core support of our Chapter’s expanding statewide programs, advocacy and awareness efforts. We also support the National LFA efforts funding and advocating for lupus research.
For many living with lupus, the greatest challenge is a lack of understanding; patients often feel they are the only ones who “don’t look sick.” We are here to listen and to make sure everyone with lupus receives answers and support. Our 2017 Faces of Hope (see page 4) represent more strong Chapter families and volunteers fighting lupus. Detra Holloway, our Columbus Walk founder and Support Group Leader states, “I have had the opportunity to meet remarkable people who lack knowledge about this chronic disease that could possibly be sittingon their doorstep.” Levi Holcomb, age 19, was able to see a doctor as a recipient of the Chapter’s Emergency Financial Assistance Fund. Mandy Collier, top walker and team for nine years in the Atlanta Walk shares, “I wake up everyday, even on the bad ones, and thank God for the day ahead, and pray for the ones this disease took too soon. I make the most of the little things, desperate to enjoy every moment I have.”
The impact on the Georgians served and empowered by our Chapter is compelling, reaching new patients and communities in 120 counties in Georgia. Our footprint is far greater than our small fiscal budget and staff (see our Georgia Map below). This fall, and in 2017 we will host 12 educational programs. In the past 10 years, we have held 68 programs.
The Georgia Chapter is a lifeline and a voice of hope for the 55,000 Georgians living with lupus. We are indebted to many wonderful families and volunteers who fight lupus every day and who have ensured our Chapter’s growth. Together, we work towards a brighter future for all living with lupus.
We are honored to share three very special videos sharing patient’s stories and how lupus has changed the journey of their lives and our Chapter’s impact.
Chapter President and CEO
Our Reach Across Georgia
Thank You to Our Year Round Sponsors
Contact the Lupus Foundation of America, Georgia Chapter Staff:
Lupus Foundation of America, GA Chapter
1850 Lake Park Drive, Suite 101
Smyrna, GA 30080
Chapter President and CEO
Program Director and COO