Human Interest Archive 2009

Bank of America Chicago Marathon

October 11, 2009

 Sue Koch     
  Becca Weiner 

Sue Koch

Chicago West Town resident Sue Koch wanted to spend this October 11 running the Bank of America Chicago Marathon. The 26-mile run was to be in memory of her mother and an opportunity to raise awareness for chronic obstructive pulmonary disease (COPD). Although surgery for a foot injury will keep her out of the marathon, Sue has raised more than $1,500 in support of local COPD programs.

Sue’s mom, Beverly, had COPD for years without telling her children. It wasn’t until she was in the emergency room for shortness of breath that she let her family know about her lung disease; according to Sue, she didn’t want to worry her children.

COPD refers to both emphysema and chronic bronchitis, conditions that make breathing difficult due to airflow obstruction. COPD is the fourth leading cause of death in the United States, and the only one of the top five causes continuing to rise.

“Everyone knows about lung cancer, but even some smokers don’t know what COPD,” Sue said.

When Beverly started smoking in the 1940s, the risks were not as well-known as they are today. Regardless, people who have smoking-related diseases are often blamed or stigmatized for causing their own illness.

“People make bad decisions, but that doesn’t mean that they should be afflicted with a horrible disease like cancer or COPD,” Sue said. “My mom was 77 when she passed, and people around her age had no idea that smoking was bad for them. And by the time they did, they had been addicted for 20 or 30 years.”

Sue’s mother’s death came shortly after her father’s, and inspired Sue to do two things: First, she changed career paths to spend more time with family and create a more fulfilling career. She left her job of 15 years in technology as senior management and started her own business in professional small business and life coaching. 

“I like to work with people who are going through career or personal transitions, coping with personal trauma, facing elder care issues, or setting fitness and wellness goals,” Sue said. “I am great at working with people as they balance taking care of themselves and their families.”

Second, she decided to fundraise and raise awareness about COPD. Sue joined Lung Power Team, a group of athletes associated with Respiratory Health Association of Metropolitan Chicago. These competitive athletes participate in nationwide races to support lung health awareness and fight lung disease, so the team was exactly what Sue needed.
 
“Groups specifically focused on COPD are hard to find,” said sue. “Respiratory Health Association has a lot of programming and outreach efforts aimed at helping people living with COPD and their families, and that’s what I wanted to focus on.”

Sue’s passion for raising awareness has enabled her to raise a substantial amount of money for local lung health programs, and she has been educating others about COPD in the process.

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Becca Weiner

Buffalo Grove resident Rebecca Weiner, 20, is participating in the Bank of America Chicago Marathon. Like many of the runners, she has been training for months. Unlike many of the runners, Becca has asthma. On October 11, she will prove that people who have asthma should never feel limited by the condition. In fact, she says, running has helped her asthma more than anything.

“Running keeps me in shape, and it really has kept my asthma under control,” Becca explained. “I have a really strong heart even though my lungs are not as strong as they should be. I’ve kept my body very healthy.”

Since she was diagnosed 8 years ago, Becca has learned to control her asthma and avoid asthma episodes. She takes her reliever inhaler with her on every run as a precaution, and is thankful that she is able to run as much as she does.  A junior at University of Illinois, she is double majoring in chemistry and Spanish with the hopes of going to medical school to become a pulmonologist.

“I’m really healthy, but a lot of kids are so sick,” Becca said. “I’m fortunate that I am so healthy, and I want to help people that are less fortunate get the right treatment and be healthy like me. I want them to know that asthma should not be a limiting factor in anything they do.”

Becca is running the Chicago Marathon as a member of the Lung Power Team, a running group dedicated to fundraising on behalf of Respiratory Health Association of Metropolitan Chicago.

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Skyline Plunge! Chicago

October 25, 2009

 Alison ElderKeith Franzen
 Garth IngramLauren LaViola
 Trace SchmeltzLeeAnn Steinfeldt

 

Alison Elder

Alison ElderAlison Elder has been athletic her entire life, but it was not until a year ago that she was diagnosed with exercise-induced asthma. Although she had been an active runner and skier for years, like many Americans, she was unaware of the signs and symptoms of asthma.

When she exercised, Alison felt short of breath and wheezed, but assumed that her symptoms were an indicator of her health, not a serious condition. Last February, she participated in Hustle Up the Hancock, a 94-floor stair climb up the iconic Chicago building. When she reached the 30th floor completely out of breath, a concerned staff member of the host organization, Respiratory Health Association of Metropolitan Chicago, suggested she see her health care provider for asthma testing. A few weeks later, Alison was diagnosed with exercise-induced asthma and provided with an inhaler to use before aerobic exercising.

"If it wasn't for Hustle Up the Hancock, I would never have figured out why I had trouble breathing," Alison said. "It is worthwhile to educate yourself on some of the issues with asthma before they come up. My asthma is controllable, but it has an impact on how I do what I do."

Thankfully, her asthma has not been limiting. Aside from a dose of her inhaler before exercising, Alison is able to continue her athletic pursuits without having to stop to catch her breath. On October 25, she will rappel 27 stories down Chicago's theWit Hotel to participate in Respiratory Health Association's Skyline Plunge! For Alison, the event is an opportunity to combine her passion for athleticism and her dedication to lung health, including her own.

"I am always up for a thrill, and I'm a nut when it comes to doing things with high altitudes and scaring myself," Alison said. "This is going to be so much easier than Hustle Up the Hancock; I get to take the elevator up and just rappel down!"

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Keith Franzen

Larry and KeithOn October 25, Northbrook resident Keith Franzen will rappel 27 stories down theWit hotel in Chicago as a participant in Skyline Plunge! Hosted by Respiratory Health Association of Metropolitan Chicago, the event supports the fight against lung disease, and offers Keith a once-in-a-lifetime opportunity to honor his brother, Larry.

Early in 2008, Larry was diagnosed with idiopathic pulmonary fibrosis (IPF), which causes permanent damage to the lungs and shortness of breath. The cause is unknown, but as the disease progresses, the lungs lose all function.

While Larry was awaiting treatment in Florida, he and Keith's mother passed away in Iowa. Larry was able to view the funeral via webcam. Three days later, he got a call that a lung donor was available.

"I can't help but feel like he had somebody pulling for him," Keith said.

Since his double lung transplant in November 2008, Larry has been steadily recovering. Still, his IPF and his transplant will affect him for the rest of his life. Keith decided to participate in Skyline Plunge! to raise money and awareness for lung diseases like IPF. He has raised more than $3,000, and is upping his goal to $5,000.

"I prefer to think I've raised this much because of my brother's inspiring story, and not my friends' desire to see me walk off of a perfectly fine building," Keith said. "I feel really blessed and humbled that people have responded as generously as they have."

The focus, though, stays on Larry.

"What I'm doing is a really small thing when you consider the person and the family that was donor to my brother, what Larry went through, and all of the people who are affected by lung disease," Keith said.

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Garth Ingram

Garth Ingram"I've looked up at those buildings and thought about scaling them thousands of times," he said. "When the opportunity surfaced, it was a no-brainer."

On October 25, Oswego resident Garth Ingram will join 100 others in rappelling down theWit Hotel's 278-foot façade (27 stories) in Skyline Plunge! The event will raise funds for Respiratory Health Association of Metropolitan Chicago, an organization that supports healthy lungs and fights lung disease in Chicago.

Along with love of adventure, Garth is participating as a way to set an example for his children. Garth has had asthma since he was young, but refuses to let it interfere with what he wants to do. In addition to running a marathon and biking regularly, Garth sees Skyline Plunge! as an opportunity to prove that he is not limited by the disease.

"When I was a kid, my parents never told me I couldn't do anything, even though, at the time, lots of people with asthma were excluded from activities," Garth said. "Some people think of asthma as a reason to not do something; I don't think of it that way at all."

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Lauren LaViola

Lauren LaViola"I am very afraid of heights," said Lauren LaViola. "But when you face a fear in memory of someone else, it makes it easier to do. My dad lived his life for me... I think I can rappel down a building."

On October 25, Lauren LaViola will rappel 27 stories down theWit Hotel in Chicago. Skyline Plunge! is a fundraiser for Respiratory Health Association of Metropolitan Chicago, and Lauren is participating in honor of her father, Larry LaViola, who passed away in August 2009.

In early July 2009, Larry sought treatment for back pain, which he thought was due to an injured spinal disc. Scans revealed several spots on his lungs thought to be blood clots. A biopsy revealed otherwise and he was diagnosed with metastatic stage 4 non-small cell lung cancer. Doctors estimated he had 12 to 14 months to live if he took treatment with an aggressive chemotherapy cocktail, but the cancer had spread so far and so quickly that he passed away less than two months after diagnosis.

Larry was a physician's assistant at the same clinic for 35 years in Snellville, Ga. In that time, he developed a strong following of patients and families. When he was first diagnosed with lung cancer, his wife, Susie, started an email list that included more than 200 concerned patients and friends. When he passed away, his patients reached out to Susie and Lauren to remember their favorite health care provider. His hometown police department is planting a tree in front of their new station in memory of Larry.

Just 40 hours after signing up for Plunge, Lauren raised $1,000. To date, she has raised more than $2,600 to support lung health programming and the fight against lung disease. She attributes the overwhelming support to her father's legacy.

Susie is flying up from Georgia to support Lauren as she takes the plunge. Along with her mother's support, Lauren hopes to work through her fear of heights so that she can honor her father's memory. But, just in case she can't one of her dad's friends reminded her that, "my dad will be with me to carry me down."

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Trace Schmeltz

Trace Schmeltz"I have seen first-hand what it means to not be able to breathe and what it means to fight for every breath you take," he said. "I've seen how it ruins a life and how it messes up a family. I've always, when given the opportunity, supported lung disease causes."

Downers Grove resident Vincent "Trace" Schmeltz III lost his dear friend, Chad Park, to cystic fibrosis. Their parents were close friends, so Trace and Chad had been friends for as long as they could remember. But Chad's early death - he was only 29 years old - shook Trace to the core.

"I don't recall knowing anything extraordinary until we were in high school," Trace said. "You always knew that Chad had something going on, but it seemed, as a kid, like ‘Oh, Chad has a cold' or ‘He's just got to stop when you're running around.'"

Cystic fibrosis is a genetic disorder that causes thick layers of mucous to build inside the lungs. In Trace's words, it "creates a swamp in your lungs." People who have cystic fibrosis are more likely to contract respiratory illnesses, and less apt to fight them effectively.

At the time, the pain of losing his friend made Trace shut down completely. He struggled to interact with Chad's family, didn't know what to say to them or how to act. Years later, he regrets that he couldn't handle the loss better.

"At some level, I look back on that and don't know if there is anything that I can do to redeem myself," said Trace. "I sure would like to see a better solution for people who have cystic fibrosis."

In an effort to ensure better treatment in the future, Trace is raising funds and awareness for Respiratory Health Association of Metropolitan Chicago. As a part of Skyline Plunge!, Trace will rappel 27 stories down theWit Hotel on October 25.

As an experienced rappeller, mountain guide and paraglider, Trace's participation is less about the thrill and more about remembering Chad. To date, he has raised more than $1,300 for the event, and continues to raise awareness and funds.

"I want to do this for his family and for him," Trace said. "It's nice to get involved in an endeavor and have people support you and support the cause."

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LeeAnn Steinfeldt

LeeAnn SteinfeldtGlendale Heights resident LeeAnn Steinfeldt is always up for an adventure, even if it means she'll have to conquer her fear of heights. On October 25, she will rappel 27 stories down Chicago's theWit Hotel as part Skyline Plunge!, a fundraiser for Respiratory Health Association of Metropolitan Chicago.

LeeAnn is rappelling in memory of her grandfather, Nicholas Dercks, from whom she inherited her adventurous spirit. The two were inseparable for as long as LeeAnn can remember. When she moved away for college, she made special trips home just to see him and helped him around the house over her summer vacations. Last Christmas at 97-½ years old, Nicholas passed away from complications with congestive heart failure and chronic obstructive pulmonary disease (COPD).

"He always inspired me to do different things," said LeeAnn. "He always overcame challenges; even with COPD, he walked every single day and never balked about anything. He was always a positive person."

COPD is a respiratory disease that includes emphysema and chronic bronchitis. Although more than 12 million Americans have been diagnosed with COPD, LeeAnn found that a lot of people don't know about the disease. Through her fundraising efforts, she has raised more awareness than she had expected.

"If you say emphysema, people understand that," said LeeAnn. "A lot of people know someone who is affected by respiratory issues, but the general population does not know what COPD is." She added that when she tells people about her grandfather and COPD, they are happy to support the cause.

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Hike for Lung Health

September 25, 2009

Carri Bregar
Ryan Fader
William Mulligan
Nolan Rahm
Sister Mary Pat Volz

 

Carri Bregar

Carri Bregar lost her father, Jerry, to lung cancer in 2004. Since then, she has been an advocate of lung disease research, but wanted to raise awareness with more than a checkbook. Looking for a more creative option, she decided to participate in Hike for Lung Health a multi-charity event hosted by Respiratory Health Association of Metropolitan Chicago.

"I like to do something a little more pro-active," Carri said. "My dad had to go through so much physically when he had lung cancer, and if I just write a check it's too easy. I like having something to actually do."

On September 27, Carri and her extended family will walk through Palatine's Deer Grove in memory of Jerry as part of Hike for Lung Health. The event offers a 1-mile or 3-mile walk through Lincoln Park in Chicago or Palatine and is followed by music, a picnic lunch and family entertainment.

For Carri, the walk offers an opportunity to involve the children in family in the fight against lung cancer.

"In our family, we always, always, always do some kind of charity," she said, "and this is the first time that the kids actually get to do something in their grandfather's memory."

Not only will Carri's participation memorialize her father, she is also walking to help others who are living with lung cancer. As Carri leads Team Bregar, they are focused and hopeful.

"We are doing as much as we can to bring awareness to raise funds for research for lung cancer... We need to bring more money in for the research to have a cure one day."

 

Ryan Fader

Ryan FaderThis September, 2½-year-old Ryan Fader and his family will join hundreds of others in Hike for Lung Health, a multi-charity fundraising walk to support the lung health community. Hosted by Respiratory Health Association of Metropolitan Chicago (RHAMC), this will be Ryan's third time participating in the annual event. This year, though, will be the first time he walks without the constant aid of an oxygen mask.

When he was 2 months old, Ryan was diagnosed with a mutated gene, called ABCA3, which causes respiratory distress. At the time, doctors could only tell his parents, Eric and Sheri, that their son would need oxygen; they could not treat him and knew little about his disease.

The family was directed to Children's Interstitial Lung Disease (chILD) Foundation, which provides funding and support for families whose children have similar rare lung diseases. It was through chILD's message boards and emails that Ryan's mother, Sheri, connected with other parents of children with lung disease.

"It is such a lifesaver," she said. "These are parents who have become experts in what you're going through. They know more than the doctors do about how to deal with day-to-day issues of this disease... You don't want to be the person that everyone is staring at, and having people who understand that has been so wonderful and helpful."

On September 27, the Faders and other families will walk a 3-mile route through Lincoln Park as part of Hike for Lung Health. In the past 3 years, the Faders have raised more than $5,000 to support chILD Foundation and RHAMC.

Although he was not expected to crawl, talk or walk at the same pace as his twin sister, Sophie, they have hit many of their development milestones together. In the past year, Ryan's lungs matured enough that he was able to transition from constant use of an oxygen machine to only nighttime use.

Last year, Sheri watched as other children at the Hike for Lung Health played without the aid of their oxygen masks. This year, she is happy to watch her son do the same.

 

William Mulligan

William MulliganImagine struggling to inhale, then having to exhale before your lungs feel full. Imagine walking a block and being exhausted. Imagine watching your child constantly struggle to breathe.

Each day, Chad and Lisa Mulligan’s 16-month-old son, William, struggles to breathe. William has children’s interstitial lung disease (chILD). Specifically, he has a genetic mutation ABCA3, which causes thickened cells between the lungs and blood vessels and makes the transfer of oxygen difficult. When William was diagnosed in February of 2008, doctors could tell his parents little about the condition, which was only identified four years earlier. With long-term studies and mass information unavailable, the diagnosis and uncertainty were hard on the Mulligan family.

“When it is your child, even the word ‘disease’ is very intimidating,” said Chad. “It drives an unimaginable amount of fear through you initially, and without concrete information to back it up, you think the worst.”

“It was such a long, hard road to diagnosis,” said Lisa. “Talking to other parents, this seems to be their story, too. Many doctors just don’t know about chILD. Thank God we found a great doctor to take care of William.”

But in large part, the Mulligans are still in the dark on their son’s disease. They joined chILD Foundation (www.childfoundation.us), a support network for families of children with interstitial lung disease, but still do not have a definite answer to questions about their son’s future. But they’re committed to doing what they can.

The Mulligans recently participated in Hike for Lung Health, a 3-mile walk through Chicago’s Lincoln Park hosted by Respiratory Health Association of Metropolitan Chicago to support a dozen lung health charities. The family raised nearly $10,000 to support chILD Foundation, and have only just begun what will be a lifetime goal of awareness and fundraising. Hike for Lung Health charity partners have raised more than $118,000 to date, and donations will be accepted at www.lungchicago.org through October 19, 2009.

The Mulligans’ efforts are aimed at supporting chILD Foundation’s goal of creating a database of kids with chILD to encourage health care providers to exchange treatment information.

“It’s such a rare disease that unfortunately it’s not going to be picked up by a pharmaceutical company or be supplemented by government research,” said Chad.

Lisa added, “I hope the one thing we can accomplish is to raise awareness, especially to health care providers.”

Because they expend so much energy trying to breathe, many children who have chILD rely on oxygen, high caloric diets and even feeding tubes to keep them steadily developing. Luckily for William, although he requires an oxygen at all times, he is otherwise a typical, active toddler.

According to his father, William treats everything like a baseball; if he can get his hands on it, he will launch it across the room.

The problem is that having such an adventurous toddler on an oxygen tank is almost like having him on a 50-foot leash. As William moves from one area of the house to the next, he can easily tangle himself and everything around him in the tubing, which means his parents have to constantly watch and untangle him. It’s a challenge that the Mulligans hope William will outgrown in a few years, perhaps requiring oxygen only at night.

“We don’t limit ourselves or William,” Chad said. “He is out of the house playing as much as he is inside; he has been on airplanes; and we take him on trips. He has a pretty big obstacle in front of him, but one that our family will overcome together.”

William lives in St. John, Indiana, with his parents and three sisters, Maggie (8), Joie (6), and Malorie (4).

 

Nolan Rahm

Before his first birthday, Nolan Rahm’s family nicknamed him “Little Bear” because he was such a grumpy child. His parents, Bradley and Nancy, knew that it was not normal for their infant to sleep only 3 hours at a time each night, but their pediatrician offered no suggestions. Frustrated, the Rahms took their son to a specialist, who quickly identified that their child had asthma, although his only symptom was not sleeping well.

He started nebulizer treatments and a rescue inhaler. To ensure that they had identified each of Nolan’s triggers, the Rahms removed all carpeting, stuffed animals and houseplants from their home, and even sent the family pets to live with Nancy’s mother. Thanks to the dedication of his family, now 6-year-old Nolan has his asthma controlled.

Although the nickname stuck, Nolan is no longer a grumpy kid. For any family who has been told that their child’s asthma will be limiting, Nolan proves otherwise. He has played four seasons of soccer and is an orange belt in tae kwon do. This year, he will participate in his third Hike for Lung Health, a 3-mile walk through Chicago’s Lincoln Park. 

“This is all thanks to the researchers and medications that have been discovered for asthma,” said Nancy. “Without the proper medication, I have no doubt he would be unable to participate in tae kwon do, soccer or even gym at school.  This is why we walk: to donate money to research for lung disorders to help kids like Nolan." 

The Hike for lung Health is an annual event hosted by Respiratory Health Association of Metropolitan Chicago. The multi-charity event benefits local organizations that are dedicated to lung health, and raises awareness about asthma and other lung diseases.

Before Nolan had his asthma under control, he could barely walk 1 block without getting tired. His parents noticed that he would play hard for about 15 minutes, then slow down, then sit down. When they decided to participate in their first Hike for Lung Health, Bradley and Nancy started preparing Nolan for the walk a full 6 months in advance, wanting to ensure that he was not too worn out to complete the course. Thanks to their efforts, Nolan made the trip.

“We wanted to do something for him and to help raise awareness,” said Bradley. “We really needed to show him that he can do what other kids are doing. We wanted him to know that just because he has asthma, doesn’t mean he can’t do things.” 

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Sister Mary Pat Volz

Sister Mary Pat VolzOn September 27, Sister Mary Pat Volz will participate in Hike for Lung Health, a 3-mile walk through Lincoln Park. As a person living with asthma, she is personally committed to the event’s mission to raise awareness and support for lung diseases. And, as the bus driver for Resurrection High School in Chicago, she sees the ways that lung diseases like asthma can affect the young people in her community. 

"It is important to me that all people are aware of asthma," said Volz. She added that she has helped students learn to manage their asthma and "learn how to use inhalers properly by passing along information that I have picked up at the walks."

Volz has supported Respiratory Health Association of Metropolitan Chicago for 6 years, and this will be her third time walking in Hike for Lung Health. While visiting her pulmonologist's office, she saw a brochure about RHAMC and was excited to see that Hike for Lung Health benefited programs for children to learn more about their asthma.

Each year, Sister Mary Pat has found creative ways to fundraise for the walk. Along with asking family and friends to sponsor her, she made embroidered towels, friendship bracelets, and even sold ice cream floats at school to raise money for her team.

"The second year I walked, I sold wristbands," said Volz. "I had my young niece help me sell in Minnesota, so I put her on my team and they sent her a shirt. She still wears it. "

Sister Mary Pat is the only member of her 2009 Hike team, but invites students and other families to walk with her. The information that she gathers from Respiratory Health Association and the other charity partners, as well as the opportunity to sell her crafts to support the cause, keep her coming back each year. 

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