Gretchen Schoenstein has dealt with multiple autoimmune diseases — including Hashimoto’s disease and sarcoidosis — for over two decades.
She’s juggled medications, sick days and doctors who told her all the things she couldn’t do. Living with these little-understood illnesses often made her feel invisible. But in 2014, when she walked through the doors of the Illuminations Luncheon and Research Showcase hosted by Benaroya Research Institute at Virginia Mason (BRI), she felt something else.
“I’ll never forget seeing the giant banner that listed all 80 autoimmune diseases,” Gretchen says. “It was thrilling and powerful because I finally felt seen.”
BRI is unraveling how these diseases are connected and making key progress toward better ways to prevent and treat them. That’s why Operation Shooting Star (OSS) - an organization dedicated to autoimmune disease research fundraising and advocacy work, which Gretchen helps raise money for - recently made a generous donation to fuel more discoveries at BRI.
“BRI’s message resonates with OSS because we share the same core belief: progress against one autoimmune disease is progress against them all,” says Audrey Killen, who founded OSS and works closely with Gretchen, OSS’s National Ambassador.
TWO WOMEN, ONE CAUSE
Audrey and Gretchen teamed up in 2016, united by a desire to make more people aware of autoimmune diseases — and to help researchers pursue cures.
For Audrey, this quest started when she received a life-changing diagnosis in 2009: multiple sclerosis (MS). She’d watched her father struggle with rheumatoid arthritis (RA), but it wasn’t until her own diagnosis when she realized that RA, MS and many other diseases of the immune system are all autoimmune diseases.
Audrey resolved to support organizations that fight these diseases, but couldn’t find one in her home state of Delaware. So she launched OSS in 2010.
“Autoimmunity is so much bigger than MS and I wanted to create an organization that reflects that,” Audrey says.
Gretchen followed a similar inspiration. When she was in serious pain and unable to walk in 2006, her doctors diagnosed her with her third autoimmune disease: sarcoidosis. Though she wasn’t much of a runner at the time, they told her she’d never run again. In 2010, she decided it was time to stop walking on eggshells — so she set out to prove her doctors wrong.
She ran her first half-marathon in 2010. She ran her 80th in 2019.
“They told me this body was broken,” Gretchen says, “So every time I cross the finish line, it’s a victory.”
CURE ONE, CURE ALL
Now, a few years into their partnership, Audrey and Gretchen are a force to be reckoned with: Through OSS, they’ve raised thousands of dollars for BRI and other research organizations. Audrey also led the charge to get November declared Autoimmune Disease Awareness month in Delaware and Gretchen is hoping to do the same in her home state, California.
“When I was first diagnosed, it was frustrating and fascinating to learn that my dad and I basically had the same disease but in different parts of our body,” Audrey says. “That’s how we developed OSS’s slogan: Cure one, cure all. When I learned about BRI, I was immediately hooked because they do everything OSS stands for.”
Audrey and Gretchen recently visited BRI and met some of the all-star researchers, including BRI President and Director of Translational Research Jane Buckner, MD. Dr. Buckner talked to them about BRI’s comprehensive approach to research, and how BRI researchers collaborate to study diseases of the immune system. They also got a first-hand look at a BRI lab with Principal Investigator Eddie James, PhD, where they received a crash course on T cells and autoimmunity.
Dr. James explained that most T cells are “good guys” that protect us from viruses and bacteria, while a few “bad guy” T cells promote autoimmune diseases like type 1 diabetes (T1D), Crohn’s disease and lupus. So far, studying these bad guy T cells has helped BRI move closer to understanding why autoimmune diseases happen, and how they might share a common cause – for example, understanding how the same type of T cell plays a role in both T1D and RA.
“Nearly everyone is affected by autoimmune disease or knows someone who is — and many people want to join the fight but don’t know how to get involved,” Dr. James says. “It was inspiring to see how OSS has taken the initiative to join the fight to combat these diseases.”
The OSS team took home one key message from their visit to BRI.
“Meeting BRI’s team and talking to Dr. Buckner showed us that BRI gets it — they know there’s a lot of work to do, but they’re innovative and persistent,” Gretchen says. “It showed us, without a doubt, BRI will be the ones to find a cure.”