September 24, 2024 —

The 21-member LRA Team Life Without Lupus is training hard to hit the streets of NYC for the 2024 TCS New York City Marathon Sunday, November 3. As they gear up to build the endurance needed to run the 26.2-mile course, they need your support in reaching their fundraising goals.

Each of these athletes is passionately committed to our cause, finding in the Marathon a way to take back some control over lupus while raising much-needed awareness for the often-misdiagnosed disease. Four are running despite living with lupus themselves. The other team members are running on behalf of someone they love who cannot – moms, sisters, children, aunts, cousins.

Michael Ferretti, Oliva Snell and Dr. Shanthini Kasturi represent the diversity of the team – a dad, young woman with lupus and a rheumatologist.

Taking Back Control as a Parent

Michael is a devoted dad running for his 13-year-old adolescent son Logan who was diagnosed with lupus earlier this year. Michael watched Logan progress from bouts of high fevers to not being able to close his hands because of stiff joints. After a rheumatologist identified these symptoms as lupus, Logan began treatment with steroids and is now suffering with severe, rapid weight gain.

“I felt helpless as a parent when I saw my son suffering with a disease I knew nothing about,” Michael described. “As a runner, I thought the Marathon is something I could do to raise money for research while raising awareness among millions of people. And now that I’m involved, I want us to be part of the lupus community.”

Making the Choice to Run

At 22, Olivia “Liv” has lived with lupus for six years; having had to give up competitive horseback riding, she finds her choice to run the Marathon empowering. Constantly in pain, Liv finds running a way for her to choose rather than be a victim of a symptom she can’t control. While she anticipates having to run very slowly and feeling nauseous while needing ice packs at the finish line, Liv says, “Running this marathon shows me I’m strong, that I’m empowered.”

As a college student, Liv founded a club to raise awareness for and provide mutual support among others living with a chronic illness. Upon graduation this past year, she was looking for another way to help and found the Lupus Research Alliance Team Life Without Lupus.

“Getting involved in supporting other people is my coping mechanism. When I’m busy and concentrating on other things, I don’t focus on how hard lupus is or how bad I feel.”

Running to Improve Lives

Shanthini is traveling from Boston to run the Marathon on behalf of people like Liv and Logan – people with lupus who she treats as a physician. Shanthini chose to specialize in rheumatology partly because she was drawn to lupus. “From a medical perspective, lupus is a particularly fascinating condition. But I was motivated by the people affected by the disease, especially the young women in the prime of their lives.”

In addition to treating patients, Shanthini is doing research to improve patients’ quality of life by incorporating patient reported outcomes – measuring what patients care about most – in clinical trials of potential treatments. With that background, she was invited to participate in a Patient Reported Outcomes meeting of the Lupus Accelerating Breakthroughs Consortium (Lupus ABC) – a public-private partnership with the U.S. Food and Drug Administration begun by the LRA that focuses on advancing development of safer and more effective treatments for lupus.

Shanthini remarks, “Running the NYC marathon, where I grew up and did my rheumatology training is the perfect pairing of my professional and personal commitment to my patients. This may be the only marathon I ever run, so running for the research that can improve the lives of people with this condition is really special to me.”

The LRA is very proud to gather this team of 21 to run on behalf of the millions worldwide facing this very challenging disease. We invite people to support Team Life Without Lupus with donations and if you are in the New York area, by cheering them on November 3 throughout New York City.