Local teen with rare disease raises money for medical studySubmitted: 06/29/2014
Story By Karolina Buczek

Local teen with rare disease raises money for medical study
RHINELANDER - Medical research can help patients and their families understand a disease. But some diseases are so rare that there's not much help out there. A Rhinelander teen with a very rare disease wants to change that.

Arterial Tortuosity Syndrome affects less than 30 people in the world. Collin Schmieding from Rhinelander is one of them.

"Collin is one of the oldest documented living people with the disease and he's 18 now," said Collin's mother, Julie Larson.

ATS is difficult to diagnose. But the symptoms are similar in some people who have the disease.

"It's a disorder of lack of collagen which allows the veins and arteries to grow very tortuous and twisted throughout the body," said Larson.

People with ATS have a high risk of having an aneurism.

"They don't play sports, they don't go jogging, they don't do anything very physical for the fear of having an aneurism," said Larson.

Collin and his family didn't know anyone else who had the disease. A few months ago, they found a Facebook page for ATS. They were able to give advice to other families.

"I was able to share information. It wasn't all positive but it at least gave them some answers to their unknown questions because their kids are a lot younger than what my son is," said Larson.

The families started a non profit so they can send their kids to the Arkansas Children's Hospital for a genetic testing study.

"It's a combination of excitement and nervousness, just wondering generally what's going to happen," said Collin Schmieding. "It's just going to be so interesting to talk and interact with other people like me."

The family held a local benefit to raise money for the trip. They believe this study can help people understand the disease.

"It's been great to see the community come together for something we really need to have done. I know there's probably a lot more people out there that are undiagnosed at this time and we're hoping that with our case study, they can get a proper diagnosis," said Larson.

Collin hopes the benefit will let people know more about ATS.

"I just want people to know about this. It's such a strange reaction when I tell people [I have] ATS. It's just a giant question mark above their head," said Schmieding.

Text Size: + Increase | Decrease -
| Print Story | Email Story
Sponsored in part by HodagSports.com


CHICAGO - A suspect has been arrested in the fatal shooting of a 9-year-old boy in Chicago and police hope to secure charges against him in the coming days, the city's police superintendent said Monday.

The boy, Janari Ricks, was shot in the chest while playing with friends near his home in Cabrini-Green on Friday night.

"He was shot and killed while doing what every child in our city should be able to do without a second thought," Police Superintendent David Brown said at a news conference. "He was playing with friends on a warm summer evening just outside his front door."

+ Read More

MADISON - Graffiti spray painted on the outside of the Wisconsin Veterans Museum located directly across the street from the state Capitol will be removed starting this week, the state Department of Veterans Affairs said Monday.

+ Read More

MADISON - More than 330,000 voters statewide have already returned their absentee ballots for the August 11 Partisan Primary, according to the Wisconsin Elections Commission.

+ Read More

MADISON - Wisconsin Attorney General Josh Kaul joined a large coalition of states, cities, and counties in filing a lawsuit against President Donald Trump for attempting to, once again, illegally leave millions out of the apportionment base that establishes the number of members in the House of Representatives that each state receives.

+ Read More
Crash outside police departmentSubmitted: 08/03/2020

RHINELANDER - Rhinelander Police Department responded to a crash on their front door Monday.

The crash took place at the intersection of N. Brown St. and E. Frederick St.

A northbound vehicle struck the RPD vehicle around 10:00 AM.

Officers on scene report there are no serious injuries requiring an ambulance.

The intersection was cleared and back to normal operation within 30 minutes.

+ Read More

MADISON - The Republican leader of the Wisconsin Senate said Monday he wants the Legislature to reconvene this week or next to strike down Democratic Gov. Tony Evers' mask mandate.

+ Read More

SAN DIEGO - The U.S. Marine Corps has identified all nine people killed when a Marine landing craft sank in hundreds of feet of water off the Southern California coast.

+ Read More
+ More General News