Remarkable moms are removing barriers to research through their advocacy.
This article was written by Emily Harari, who works as a liaison between the scientific team at ImYoo and the patient community. ImYoo is a public benefit corporation (PBC), which means that in addition to being accountable to their shareholders they are responsible for returning benefits to the public. Mamas Facing Forward received a small donation from ImYoo.
Moms can be the fiercest of patient advocates, for themselves and especially their children. Maybe it’s the “mama bear,” protective instinct that kicks into hyperdrive? Or maybe there’s some truth to the stereotype that they’re superior multi-taskers?
Or maybe, they don’t have much choice, and they are forced to adapt. Chronic illness warriors are well versed in maneuvering around the unpredictable, the inconvenient, and the downright unfair hurdles that pop up in their disease. As moms, they use those skills to roll with the punches. More than that, they’re ruthlessly efficient. They’re practically psychic when it comes to planning and militant about organization. That’s what makes moms the fiercest advocates.
Advocacy looks different for each person. You can start your own podcast, like Jenni Weaver did with My Spoonie Sisters. She raises awareness about resources for fellow chronic illness warriors, also known as “spoonies.” Jenni is a mom with rheumatoid arthritis (RA). When asked about what inspires her advocacy, Jenni shared, “I want to see my kids thrive! My nearly 23 year-old has followed in my footsteps in dealing with an autoimmune life, and it breaks my heart. I want answers and relief for her.”
Having a child with chronic illness can be the biggest motivation to take action. That was the case for Stacy Dylan, when her son, Lowell, was diagnosed with inflammatory bowel disease (IBD). She founded Connecting to Cure with another mom, in order to support IBD research and see exactly where her fundraising dollars were going. Stacy opened up about the inspiration for her non-profit: “Watching our son and seeing how [his IBD]impacted our whole family… inspired me to start our own organization to reach other families and patients who are struggling with these often difficult diseases.”
Founding a non-profit is a massive undertaking, but there are other ways to advocate, as well. Lacey became a Champion for ImYoo’s rheumatoid arthritis study, which is investigating which RA drugs work for which people. Lacy is a busy mom with rheumatoid arthritis who raises awareness about RA on TikTok, and she was interested in leveling up her advocacy to fuel scientific research. “I was inspired to become an ImYoo Champion and advocate for better RA treatments because, as a mother, there is nothing more important than being present for our children,” she says. Lacey adds, “My hope for the future is that we will have a better understanding of how the immune system works, and eventually find the right medications and maybe even a cure for our unique autoimmune conditions, ‘cause one size does NOT fit all in the medical world.”
Why has this one-size-fits-all approach persisted for so long, and how can we expect to change it? We’re still seeing that women are underrepresented in clinical research. In fact, research has shown that women are less likely to travel long distances to a clinic site than their male counterparts. Busy moms may not have time to participate in research, especially if that means driving to a distant clinic. So, how can we ensure that moms are represented in the research, especially studies on autoimmune diseases, which disproportionately affect women?
Decentralized immune studies. This is ImYoo’s approach and what inspired Lacey to Champion their rheumatoid arthritis study. ImYoo’s research studies are done from home. They mail you a sample collection kit and you send it back to their labs. “Your sample is like a molecular ‘snapshot’ of your immune system,” explains Tatyana Dobreva, co-founder of ImYoo. “We want to look at what genes are turning on and off in your immune cells from that sample you took during your last flare, for example.” ImYoo wants to take research beyond the clinic center, and bring it to your home. By “decentralizing” their immune studies in this way, they hope to make research more accessible to busy moms who want to push the science forward for them and their children.
These logistics don’t just make participation more convenient; they also make for better science. “We want to send you multiple sample kits over the course of you starting a new medication. We’d like to baseline you against yourself and understand your unique response to the drug,” Tatyana adds. “That’s what personalized medicine should look like, and it’s very promising for making new discoveries that could go unnoticed in less nuanced studies.”
What does your advocacy look like? Podcasting? Fundraising? Participating in research?
If you’re interested in participating in ImYoo’s research studies, visit their RA study or IBD study. All you need is an RA or IBD diagnosis to sign up as an interested participant. Anyone else can still sign up for updates on all their immune research by visiting imyoo.health.
