An Update from Board Chair, Barbara A. Schillo, Ph.D.

As summer draws to a close, we’re taking a moment to reflect on our summer. May was Lupus Awareness Month and was a busy time for us, with a successful 5K Walk and Run, a communications campaign to raise awareness and a host of other events and efforts to help elevate understanding and support.  Thank you to everyone in our lupus community who rallied around the cause! 

Despite strong efforts on the part of many over the past year, Lupus Link Minnesota, like many new nonprofits, has faced financial challenges. Earlier this summer, our Board of Directors made the difficult decision to address these challenges and moved to become a volunteer organization without paid staff.  We are forever indebted to our professional staff, dedicated individuals who played an integral role in the local lupus community for many years and who worked tirelessly this past year.

Since this decision, our Board of Directors has stepped up to provide leadership for the organization, meeting frequently to consider options for the future.  As Board Chair, I have stepped in to serve as the President for Lupus Link Minnesota and oversee operations. Your patience as we make this transition is appreciated and we will strive to continue to respond to messages and requests as quickly as possible.

Despite these challenges, we have supported research grants and summer student research fellows, research that is key in the development of more effective treatments for those living with lupus and, ultimately, in finding a cure.  Our outreach via our social media channels also continues, providing the lupus community with hope, resources, and information. This summer we shared links to a needs assessment for males living with lupus and featured a publication authored by Dr. Erik Peterson to educate health professionals on lupus. We look forward to sharing information about the experiences of our two summer fellows as they wrap up their work on lupus research with an established faculty researcher.

We will continue to provide updated information as our Board continues to meet and make decisions. In the meantime, we thank all of you for your continued patience and support.

Sincerely  – Barbara Schillo, Board Chair, Lupus Link Minnesota

National Needs Assessment for Males Living with Lupus

The Hospital for Special Surgery (HSS) Charla de Lupus (Lupus Chat) ® Program is looking for males, 18 years of age and older that have a diagnosis of lupus to participate in a national needs assessment. The goal of this one-time (10-15 minute) survey is to learn more about how males are impacted by lupus. They hope to use this information to understand how males with lupus manage the clinical and psycho-social aspects of their illness and identify education and support needs. To learn more about the survey click here.

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Linked via the Board: Awareness leads to research – a look at important advances in lupus research

May is Lupus Awareness Month when we come together, with focused efforts here in Minnesota and across the country, to educate our friends, families and communities about lupus. Raising awareness is key to securing the research dollars needed to move us toward a cure. We know that a greater awareness of lupus and its effects will lead to earlier diagnoses, better treatment and improved quality of life for those living with lupus.

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Give during May to DOUBLE your impact

Lupus Link Minnesota has received a $5,000 matching gift challenge from the Wasie Foundation. With your generosity during the month of May, your gift can have twice the impact on our organization and its mission to advance knowledge and mobilize resources to improve the lives of all Minnesotans and those beyond affected by lupus and related autoimmune diseases.

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Exploring apps for your lupus toolkit

Since my lupus diagnosis five years ago, I have slowly built a toolkit to help me live with lupus … Fast and I recently started looking into medical, mobile apps, and how they could become part of my lupus toolkit (and maybe even get me to delete my spreadsheets). I picked two apps, Flaredown and Medisafe, to use for the past two months, and offer up the following review of each:

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Thoughts from Tharan: Is Spring here? In due time, just like other things!

I find myself at times wanting it to be Spring. Do you? When you live in Minnesota who wouldn’t, right? When I see the sun peeking out over the cloud-laden skies in March, it’s almost as if Spring and Summer are teasing you. And yet I know there are many individuals who love winter and all the activities it has to offer from cross country skiing to snowmobiling. Many who are likely sad to see winter leave … including my son who can’t get enough ice fishing time!

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Lupus Link Minnesota awards lupus research grants to University of Minnesota and Mayo Clinic

The Lupus Link Minnesota Board of Directors announces grants to fund lupus research at the University of Minnesota and Mayo Clinic. As an independent nonprofit organization, Lupus Link Minnesota funds research and researchers to find a cure and more effective treatments for people living with lupus. 

A total of $70,000 has been awarded to projects by two Minnesota-based researchers in order to pursue these efforts. Those scientists and their projects are described below:

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Linked via the Board: Conversations about lupus

“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.

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