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Freezin’ for a Reason

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Finding people from the St. Charles/St. Louis area who have heard of Cupid’s Undie Run or Cupid’s Charities is fairly common. Less commonly known, though, is the reason Cupid’s Undie Run exists to begin with. And that is to find better treatment – and eventually a cure – for Neurofibromatosis.

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The Cupid’s Undie Run raises money for the non-profit foundation called The Children’s Tumor Foundation, which has brought in a total of $14,500,000 since its founding in 2010.

According to the Mayo Clinic definition of Neurofibromatosis, or NF, it is “a genetic disorder that causes tumors to form on nerve tissue. These tumors can develop anywhere in the nervous system, including the brain, spinal cord and nerves. Neurofibromatosis is usually diagnosed in childhood or early adulthood. The tumors are usually non-cancerous (benign), but sometimes can become cancerous (malignant).”

The Cupid’s Undie Run is an event involving people running one mile through downtown St. Louis in their underwear.

Its success can be largely attributed to Tonya Hall. Tonya is also directly impacted by NF on multiple fronts. Not only does she have NF herself, but so do her son and her daughter.

While some runners may feel a little shy about what they do – or don’t – wear, or are concerned with the temperatures, Tonya says you shouldn’t be concerned with either.

“Last year it was 70 degrees and we loved it, but that’s not important,” said Tonya. “Comfort is not the goal. My daughter has a new tumor on the right side of her face. That’s not comfortable. They can’t take that off, so why should we put on extra clothes to make us feel better or feel warmer? We always say that we’re out there ‘freezin’ for a reason’ and doing it for the kids. People can run in what they want to run in – all are welcome for sure – but that’s why we do it how we do it.”

“NF is an unpredictable disease that can affect kids and adults in different ways,” said Tonya. “My daughter has it worse than I do, as do many others. You would not be able to tell just by seeing us that my son and I have it, but my daughter has a tumor on her face, a seizure condition, and she lost an eye. It’s just much more complicated than what we have.”

To make matters even more complicated, NF doesn’t always present itself in a predictable way.

“It can be hereditary – there’s a 50/50 chance if a parent has NF, a child will,” said Tonya. “But 1-in-2,000 births will see it randomly mutate, which makes it a very common disease that many people have but are not aware of it. But we have amazing doctors who dedicate their lives to this, including the doctor we see, Dr. Guttman.”

Dr. David Guttman, who works at Children’s Hospital in St. Louis, comes with impressive credentials. As the director of the NF Program at Children’s, Dr. Guttman is internationally recognized for his work in NF, and was a member of the research group that identified the entire NF1 gene. He is the Donald O. Schnuck Family Professor of Neurology and Director of the Neurofibromatosis Center at Washington University School of Medicine, as well as Co-Director of the Neuro-Oncology Program at the Siteman Cancer Center and Washington University School of Medicine.

“He has really dedicated his life to it,” said Tonya. “He is doing all he can to find a cure for NF. We just don’t know a lot and are trying to spread awareness.”

Awareness, meet Cupid’s Undie Run.

What started in Washington, D.C. in 2010 through Cupid’s Charities as an effort to raise money to help research NF, Cupid’s Undie Run made its way to St. Louis in 2012. “We’ve really started to get it going, and now we have it to where we take over the PBR Bar at Ballpark Village downtown; we run in front of Busch Stadium and stop traffic, and it’s a really fun event,” said Tonya. “My friend, Heather Riley, who lost her daughter Nicole to NF a couple of years ago, brought me on as a participant originally.”

Tonya has been back every year since.

“You really get to know other people with NF. It’s become a yearly tradition for me to do the run, and have fun with it,” she said. “I look forward to it every year and sign up myself and my kids as soon as I can because it’s different than just a fun event. These kids deserve the world, and more and more are just not given that opportunity. You never know what it will do, so the more fundraising the better to help find a cure to give my kids – and kids like Nicole – the life they never got to have.”

This year’s run was on February 10 and was once again a rousing success.

“It really did go great this year.” said Tonya. “We had a little over 200 participants and have raised close to $46,000 so far. With final numbers including t-shirts sold at the event, we think it will end up close to $48,000. As a committee, we decided that if we hit $45,000 this year we would be happy, so anything more is just the cherry on top. We are happy to have any amount, and every little bit helps.”

“When someone registers they can choose to create a team, join a team, join a random team, it’s really up to the individual,” said Tonya. “Most, however, create a team so they can get their friends together!”

The event itself is not an actual race, Tonya pointed out, meaning there are no times actually kept. “But we do recognize the top three individual fundraisers and the top three teams who raise the most money,” she said. “The top three individuals get a medal and the top three teams get a trophy.”

Registration for the next Cupid’s Undie Run will open in October. The exact date will be released closer to that time.  For more information about Cupid’s Undie Run, visit https://cupids.org/city/st-louis/.

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