If you were at The Great (Point) 8K you might have had the chance to meet Lupus Link Minnesota’s newest board member, Christopher Dunn, and his wife, Kejal. Making their way to Minnesota from sunny Atlanta, Dunn is a Client Account Executive at ADP. He is passionate about the work of nonprofit organizations and has boundless enthusiasm for serving on the Board of Directors and connecting with the lupus and related autoimmune disease community ...Read More
It’s that time of the year when society collectively turns to an attitude of gratitude. It might not be present everywhere, but it definitely has me reflecting on what we have at Lupus Link Minnesota. As much as I know this attitude should be present all year long, we’re often working toward the things we don’t have.Read More
Many people with lupus question having immunizations, thinking it may cause a flare. Here Paul Sufka, M.D., addresses those concerns:
The decision to receive any medical intervention should come down to evaluation of the potential risks and benefits.
By Emily Gillespie, Ph.D., Lupus Link Minnesota Board of Directors
“Maybe stories are just data with a soul.”
― Brené Brown
I’m a very data-driven person. I love numbers, charts, Excel spreadsheets, and cool data visualizations. Having spent 17 years of my life engaged in lupus research, I’ve given many talks about lupus over the years. Most of these talks were vehicles for sharing data. My PowerPoint slides would be filled with tables, charts, figures, and whatever fancy, new-fangled, hyper-colored method I was using at the time to try to display my latest complex dataset. Swimming in the depths of numbers and data patterns is my idea of professional bliss.
Recently, I was asked to speak on behalf of Lupus Link Minnesota to a Women’s Health Issues interest group from the University of Minnesota Women’s Club. The topic would be lupus and related autoimmune diseases. I jumped at the chance, thinking that this would be both fun and easy. After all, I could just dust off one of my old PowerPoint presentations and re-purpose it for this event. But I later learned there would be no computer support, no projector, and thus no PowerPoint.
Happily, this forced me to re-think what it was that I hoped to accomplish with this opportunity. I realized that I didn’t want to give a lecture, or dazzle them with data. Instead, I wanted to have a conversation about lupus. Sure, I wanted to share information with them, but I also wanted to hear their voices. What questions did they have? What did they want to know more about? And most importantly, what could they share with me about any experiences they’ve had with lupus or other autoimmune diseases?
So I pulled up a chair and framed the conversation around three main messages that I hoped they’d remember the next day:
- Lupus is difficult to diagnose. I told them about the different signs, symptoms, and lab tests that have to be assembled together like pieces of a puzzle to reach a diagnosis of lupus. I admit I gave in and shared with them a little bit of data from one of my research studies, which had revealed that in a group of 300 patients, there were 175 different combinations of symptoms that had led these patients to a diagnosis with lupus. No wonder it sometimes takes years to make a diagnosis!
- Lupus mainly affects women. I shared with them that 90 percent of lupus patients are women, typically between the ages of 15-45 years old. But … men CAN get lupus, and so can children and older adults.
- You can get involved. I told them about Lupus Link Minnesota, and invited them to visit our website for more information. I also encouraged them to check out forthcoming events, not just to learn more about lupus, but to experience the incredible community that will rally to support patients with lupus and their loved ones.
And, most importantly, I heard their stories. One woman told us that her niece had been diagnosed with lupus, and that it had taken three years for her to get the diagnosis. She was able to share with me from her own experience that lupus is indeed difficult to diagnose.
As much as I love my data, it’s much more powerful to hear someone’s story illustrating the point.
I also heard about how the prospect of taking chemotherapy drugs to treat lupus can be scary. This fit in with a conversation about how there’s a lot of focus on developing new treatments for lupus that are more specific and tailored to the disease, or even to the individual patient. And I heard great questions, which energized me for the work we have ahead of us at Lupus Link Minnesota to increase awareness, fund research, and provide support and education.
To be honest, I will probably always be a data-driven person. But my experience so far with Lupus Link Minnesota has reinforced for me that stories truly are data with a soul. And even I can acknowledge that stories can be more compelling than data. So I’m grateful that I had the opportunity to hear these stories. And I hope that in the near future I’ll be able to hear more of them.
Last month, Lupus Link Minnesota visited the Mayo Clinic and University of Minnesota to hear our 2017 student research fellows’ final presentations. Each provided proof that this next generation is dedicated to furthering lupus research, hopefully for the next breakthrough. Watch them recount their experiences and ...Read More
With the passing of Labor Day, life as we know it goes back to “normal:” kids go back to school, Minnesota State Fairgoers (attempt to) return to healthier eating habits, and summer vacations become cherished memories. With this bittersweet transition, however, we also regain familiarity and routine.
For us at Lupus Link Minnesota, ...Read More
To create a brand identity that would embody the mission and work we do, we worked with the team at Saint Paul Media and they delivered a design that captured our work, voice, and will serve us for many years to come.Read More
If your employer offers a workplace giving program or campaign, consider directing a portion of your earnings directly to Lupus Link Minnesota. Your generous payroll deduction or campaign contribution, like other gifts to our organization, supports lupus research, education and awareness efforts, and support to those living with lupus and related autoimmune diseases.Read More
It’s simple really. Just .8 K. See the point? We’re not talking eight kilometers, but just a fraction of one. In miles, it’s just shy of a half of a mile. Regardless, you’ll be going the distance for lupus awareness and in support of our work here in Minnesota. Join us at The Great (Point) 8K on Saturday, October 14 at the beautiful Central Park in Maple Grove. Secure your registration today.Read More
Our Student Research Fellowship Program aims to inspire the next generation of researchers dedicated to the lupus cause. This year, five undergraduate students were awarded summer fellowships, totaling approximately $22,500 in research funding. As the summer draws to a close, so does their experience.Read More
Board and staff have been on a fast-paced journey these past months, working diligently to get Lupus Link Minnesota up and running. It’s been a privilege to work with such a dedicated group of individuals. “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.” These words from Margaret Mead have never felt so real to me.Read More
A friend of mine was recently describing the amount of time and energy his two teenagers had invested as volunteer stagehands in a local community theatre production. He delved into the dedication and commitment it took for everyone, himself included as a cast member, to pull together all elements of the play -- from lighting to costumes to scene construction to ticket sales -- before opening night. If you’ve been involved in any type of theatre production, and even if you haven’t, you likely know what you’re witnessing on stage is a fraction of the effort.Read More