The 2018 edition of Lupus Spiel USA raised $96,000 towards the Lupus Research Foundation.
By Price Atkinson
It's been more than 15 years since my mother died. And every day still feels like it was yesterday.
Diagnosed with lupus while I was in high school, my mom battled the most severe and aggressive form during my years in college. Thru many different cocktails of medicines and treatments, doctors were able to get it under control for her to live a "normal" life again.
Until March 22, 2002, when my mom's life was taken out of the blue after a lengthy battle with lupus. I was crushed losing my best friend.
The hurt, pain and sorrow have been dormant for years. Until I met American curler and skip Todd Birr and his wife Regan last year.
Annually, the Birrs host "Lupus Spiel USA" at the Four Seasons Curling Club in Blaine, Minnesota. Proceeds from the event go to fund lupus research thru the Lupus Research Foundation that Regan and Todd founded together several years ago.
Now one of the largest curling pro-ams in the world, the three-day Lupus Spiel draws celebrity skips from across North America, including Canadian World Champion and Hall of Famer Kevin Martin, who held a series of skills camps at Four Seasons the day before.
For those unfamiliar, lupus is a systemic autoimmune disease where an individual's immune system attacking their own tissues, organs and joints. Approximately 1.5 million Americans are affected, while a majority of those diagnosed are women according to the Lupus Foundation of America. It's often difficult to diagnose and there's no cure - yet.
Less than two weeks ago, Regan and her team of volunteers led by Todd (also the head ice technician at Four Seasons) and friend Carrie Benton, celebrated another year of success with their fifth-annual event.
"I'm already thinking about how to make it bigger next year," Regan said this week. "I'm just blown away again by the generosity of all the curlers and their efforts to raise funds."
That generosity totalled approximately $96,000 raised to fund lupus research, quadrupling the $23,000 raised during the inaugural event in 2014. Thanks to an increase in corporate matches this year, Regan is hopeful of hitting the $100K mark with donations still coming in.
However, Regan never thought she'd see this level of success. Not as one of approximately five million people suffering from lupus.
"I dreamed of this when I was too sick to do anything about it," she said. "The first thing I had to do was come to terms with having a disease. Number two, it took me years to even say 'I have lupus.' I couldn't say those three words.
"I started with advocacy back when I finally started saying 'I have lupus.' I was life-threateningly ill and for years it was pretty scary. But over time I started to heal and feel better and wanted to make a pro-am but didn't know how."
Regan credits husband Todd as the driving force behind the now popular Spiel and their Foundation's success.
"Todd Birr has been the key in all of this," Regan said. "He helped me form the Spiel, he gave me the support and encouragement to form the Foundation. He knows everybody and makes recommendations on who we should call and has just been a huge, huge help in this event."
Born in Canada and now an American citizen, Regan noted that her efforts are fueled by an army of supporters who stood by her during her own fight to live.
"This Foundation is not just a combination of me dreaming about doing something about lupus and advocacy," she said. "It's teamwork of all the supporters all these years, encouraging me to speak and encouraging me to write."
Many of those supporters now include high-level, Olympic and World Champion curlers who donate their time to serve as celebrity skips at Lupus Spiel.
A record 36 teams competed in this year's Spiel with players bidding on celebrity skips that captain respective teams and also teach along the way. Olympians Becca Hamilton, Jessica Schultz and Jason Smith are among the mainstays who've participated and skipped teams every year since the Spiel began.
A pair of Hamilton's teammates from the Winter Olympics Nina Roth and Tabitha Peterson joined her in donating a Team USA Olympic broom from PyeongChang as one of this year's auction items.
Another big moment came when Martin stood up and donated a pair of all-session passes to any Grand Slam of Curling event during the upcoming 2018-19 season (thanks in part to CBC commentator and 1998 Olympian Mike Harris).
One personal highlight for Regan a few weeks ago came from having both her parents in attendance but also the impact made by inviting Foundation stakeholders to attend Saturday night's dinner and banquet for the first time.
"There's a moment in the room where I said, 'Okay people in the room directly or pretty closely affected by people with lupus stand up.' You should have seen the number of people who stood up," Regan said.
"I think the primary thing people learn is that this is a very prevalent disease. One in 210 people have lupus and then they learn it's life-threatening and those are the two shocks to people. Thirdly, they're learning from our researcher why he's targeting now eight years to a cure and how he plans to achieve that."
Regan never stops thinking ahead to what's next. She's full of ideas and her wheels constantly churn looking for ways to raise the bar from year-to-year. Next year's event has already been dubbed "The Super Lupus Spiel USA" with a unique format in the works.
As someone who has had life flipped upside down by lupus, I'm blown away by Regan's personal strength and commitment to combat the deadly disease once again - this time in fundraising for research to find a cure.
It's not a matter of if but rather when.
I wish my mom was still around to meet the Birrs and experience their commitment to the fight. Then I think I'd be successful in getting her on the curling ice for the first time.