Debbie Schwartz is absolutely convinced that a cure for lupus will be found in her lifetime.
Why? Because she’s done something like this once before.
Debbie previously dealt with epileptic seizures as a young woman. Despite potential risks, she wouldn’t accept a future of disability and went ahead with the experimental brain surgery her doctor recommended. She hasn’t had a seizure since.
“By advocating for myself and trying something newly developed, I helped find a cure for seizures,” Debbie shared. “That same willingness to venture into scientific investigations is what will help to also find the cure for lupus.”
Now, she is doing everything she can to make that possible.
Advocating for Yourself Can Make All the Difference
Debbie faced a decade of misdiagnoses and unnecessary procedures. After a long series of hospital stays without any answers, she began searching for a doctor who would really listen. With continued symptoms – including swollen joints, and facial redness/burning – a dream led her to ask a new rheumatologist if this could be lupus.
Open to out-of-the-box thinking, the doctor agreed to run the tests for autoimmune diseases, and it came back positive for lupus and several others.
Treatments were trial and error with side effects that sometimes necessitated discontinuing their use. Some days, she was too achy to get out of bed.
But always a fighter, Debbie determined to fight harder for a cure.
“I believe that if my taking a chance helped lead to a powerful treatment for epilepsy, then I owe it to myself—and future generations—to do everything I can to fight for a lupus cure too,” she said.
Advocating for Change
Knowing that fundamental scientific discovery is critical to developing potential treatments and ultimately finding a cure, Debbie and her husband, Jack, join the Lupus Research Alliance every year to ask their legislators to support increases in federal funding for lupus research.
Now in their 15th-year advocating, they meet with Senate and House of Representatives staff members, nurturing relationships they have built over the years and requesting they prioritize lupus research in each annual federal budget.
Their efforts along with the outreach by dozens of other LRA advocates reaped tremendous success last year: Most notably, funding for the Lupus Research Program, part of the Department of Defense’s Congressionally Directed Medical Research Programs (CDMRP), was restored to $10 million for this year.
For Debbie and Jack, they approach advocacy as a team sport – attributing their success to building on each other’s strengths. Debbie often starts off the calls with staffers talking about her own personal lupus journey followed by Jack’s presentation of the facts and the specific requests the Lupus Research Alliance is advocating for on behalf of those impacted by this disease.
“I was very nervous for our first meeting years ago and afraid that my not being an eloquent speaker would reflect poorly on our cause,” Debbie noted. “But when I realized that legislators and their staffers are just people who needed to hear what we had to say about lupus, I knew I would be okay. And we have had great meetings every year.”
“Going to Congress and telling our elected officials what they need to get behind is the job of every citizen,” said Jack. “It’s part of what makes America ‘America.’”
Advocating by Sharing and Caring
For the Schwartz’s, advocacy extends beyond Capitol Hill.
A firm believer in fate, Debbie happened on an announcement for the Lupus Research Alliance New Jersey Walk with Us to Cure Lupus just a week after she was diagnosed. The family has been walking with the organization every year since – even after moving to Atlanta.
Between their Walk team, Team Debsquared, and creative fundraising efforts such as weekly bowling events, the Schwartz’s have raised more than $45,000 for lupus research.
To inform her asks for fundraising and legislative action, Debbie has taken part in many lupus studies testing various treatments. And, whenever possible, Jack also participates as a “healthy control” subject in comparison to people with lupus. Most recently, Debbie joined the Lupus Landmark Study, a groundbreaking long-term study led by the Lupus Research Alliance to accelerate the development of personalized treatments.
Debbie noted, “People ask us why would you want to take part in a clinical trial, and I answer because there’s no cure, and I want a cure.”
In her everyday life, Debbie isn’t shy about talking to people about lupus and the need for scientific investigation every chance she gets. Debbie routinely wears her Walk with Us to Cure Lupus t-shirt or her purple Lupus Research Alliance bracelet around town to spark questions.
“Lupus is a hidden disease, and for the world to care enough to find the cure, we can’t be afraid to show its impact,” Debbie shared.
“Nothing will change unless we try everything we can, and that takes advocating in every sense of the word. I may not find a cure for myself, but I don’t want the next generations to suffer.”
Tags: Department of Defense’s Congressionally Directed Medical Research Programs, Jack Schwartz, Debsquared1, Walk with Us to Cure Lupus, Debbie Schwartz, Lupus Landmark Study