Mother-daughter duo work to raise awareness for cause close to their hearts
Like founders of many nonprofit organizations, Tamara Rajah and Alison Sheppard are passionate about helping people. The duo works through Skip To My Lupus to educate and support those diagnosed with lupus, a disease they’ve found many people don’t know much about.
Rajah and Sheppard are no ordinary team though. They are able to give firsthand advice about lupus, a chronic autoimmune disease that can cause the body to attack itself, as they both live with it daily. They are a mother and daughter who have lupus, even though most research indicates that the disease skips a generation.
“We are going to help as many people as possible fight like we are,” Rajah said. “It’s a silent illness, and people find it hard to empathize with patients.”
Although the effects of lupus can vary from person to person — from inflamed joints to kidney failure — its symptoms are often the same in the beginning. Feeling fatigued, being sensitive to sunlight and having achy joints led Rajah and her daughter to seek medical advice in 2003. They were diagnosed about three months apart.
Skip To My Lupus was first established in 2006 Augusta, Ga., with the mission of supporting some of the hundreds of people who are diagnosed with lupus each year. According to the Lupus Foundation of America, nearly one in every 200 people have lupus.
Rajah said the name for Skip To My Lupus came to her in a dream. She prayed over the idea of forming a support organization for nearly two years before it officially was founded. Skip To My Lupus received initial support from Sen. Ted Kennedy on behalf of his daughter who had lupus.
When Sheppard began studying at Columbia College, she and her mother realized the Midlands was lacking in dedicated support for lupus patients.
For a major capital city, there weren’t many resources, Sheppard said.
After getting the support groups and services running smoothly in Georgia, Rajah and her husband, Yousef, relocated Skip To My Lupus to Columbia in May 2012 to serve the Midlands. Fort Jackson allowed the organization to hold “Purple For A Purpose” awareness event on May 10, World Lupus Day, and the Rajahs were able to spread the word about lupus and let residents know they had a resource in their own community.
“Fort Jackson was very welcoming, and we plan on going back next May if possible,” Rajah said.
Support groups are ongoing now in Aiken while Rajah works to find a permanent home locally to hold group meetings. University of South Carolina graduate Jade Nealious is leading the Aiken groups currently through Give Lupus the Royal Treatment, her own awareness organization.
Rajah said they have been able to make dozens of connections as people come across their website when doing personal research about lupus.
“We can relate better and share tips,” Sheppard said. “It’s different for everyone but some symptoms are the same across the board.”
“Support is important for the newly diagnosed,” Rajah added. “Some think it’s a death sentence … but it’s not.”
As they did in Georgia, Rajah and Sheppard want to financially support fellow patients when possible. They know from experience that lupus flareups can result in extended hospital stays. As a result, part of Skip To My Lupus’ mission is to raise funds to help people pay for prescriptions, groceries and other needs.
“Most people don’t know as much about lupus as cancer or another high profile disease so it’s hard to get funding,” Rajah said.
Another Midlands organization has taken notice of what Skip To My Lupus is doing. Pumps & Pearls chose Skip to My Lupus as its nonprofit of the year and will donate a percentage of profits from several upcoming events to the lupus awareness and support efforts.
“My heart was touched by (Rajah and Sheppard) when I met them this fall,” said Pumps & Pearls founder Shannon Bowman.
Pumps & Pearls Charity Advocate Foundation, established in July, will put on events around the Midlands with the goal of financially supporting other charitable causes. In years past, Bowman has asked people to benefit the Ronald McDonald House and Children’s Miracle Network on her birthday. After obtaining nonprofit status for Pumps & Pearls, she elected to work with Skip To My Lupus in honor of her cousin Hannah who has the disease.
Upcoming events that will benefit Skip To My Lupus include a soda can and cork collection and recycling event in February, an awareness walk at Dutch Square Mall in March, a large charity yard sale in April and a Mother’s Day tea in May. Updates and details on the fundraisers can be found on the Pumps & Pearls website or Facebook page.