Mia’s Story: Living with Asthma During COVID-19

Mia during our 2019 State Lung Health Education Day, an opportunity for advocates to speak to lawmakers about clean air and lung health issues in Illinois.

Mia Fritsch-Anderson, 15, is a freshman at Whitney Young High School in Chicago. She began working with Respiratory Health Association at the age of five after being diagnosed with asthma. She regularly participates in lung health education and advocacy activities in her community and throughout the Chicago area, and won RHA’s Next Generation Advocate award in 2019 for her work.

Growing up with asthma has always involved extra caution and safety measures for me, but during the COVID-19 pandemic, my lung health is constantly on my mind. When the coronavirus first started showing up in the news, I immediately clued in on the extra warnings for people with lung disease. People like me with moderate to severe asthma are at higher risk of getting very sick from COVID-19. Because of this, my family and I have taken the stay at home order very seriously. I have not gone inside any restaurant or business, or hung out with any of my friends, since my last day of school on March 16. It’s especially hard to see my peers on social media going over to a friend’s house “just for a little while,” but I can’t take that risk right now.

In a way, I think living with a chronic lung disease made it a little easier for my family and I to adjust to all the safety recommendations. Many of them we already followed daily. Because a simple cold so easily progresses to pneumonia for me (at least twice a year), my family and I have always been especially careful about hand washing and have always used disposable paper towels in the bathroom. To avoid tracking germs all over the house, we have always been a “no shoes inside” family. We’ve always worked with my doctors and pharmacists to make sure I have enough of all my daily and rescue medications at home.

Since a major symptom of COVID-19 is not being able to breathe, any shortness of breath or tightness in my chest, no matter how small, has me wondering all the time if now I’m sick. And as an asthmatic, I’m already extra vigilant about how my breathing sounds, so I’m constantly worried that I’ve caught the virus. Before coronavirus, it wouldn’t phase me at all. I’d just think I needed some extra albuterol, grab my inhaler, and carry on. I’m sure every kid and teen with asthma has the same thoughts right now.

Asthma has also helped me better understand the general public’s fears around the coronavirus, like having trouble breathing, since I’ve been dealing with it all for 15 years. Recently, a family shared with me how scared their little girls were to wear face masks, because they are different and “it feels weird.” I could instantly relate to that as a lifelong nebulizer user and was able to give them tips to help them feel more comfortable. I think those of us together in this “lung disease” club are in a unique position to help others with the challenges that come from fear around breathing symptoms.

I think a lot of kids and teens, healthy or otherwise, feel helpless right now. Since I have lung disease, I can’t get out on the front line and help in ways I’ve seen others give back, like volunteering at the food pantry or shopping for neighbors. One thing I’ve been doing that helps me give back, and alleviates that “helpless” feeling, is using my knack for sewing to donate hand sewn masks to essential workers. So far, I have sewn 500 masks to donate to all sorts of workers in my community, including pharmacists, broadcast journalists, grocery store workers, day care workers, nurses, and therapists.

If you want to make face masks for yourself or others, I put together a video of how you can do it in your own home with items you may already have on hand.

To learn more about living with asthma during COVID-19, there are several resources from RHA including tips for managing your asthma. If you are interested in joining me as a lung health advocate, click here!

Jen Runs to Be Part of Something Powerful

Written by Amanda Sabino

Jen Dorval admits her running background is not the most extensive. But for Jen, running with Respiratory Health Association’s Lung Power Team in the Chicago Marathon is about more than just the race. It’s to honor her sister, Dee, who passed away four years ago due to chronic asthma.

two young sisters sit next to each other

Dee (left) and Jen

“Her goal was to run a 5k,” Jen says. “That was so sad to me because all she wanted was to run three miles…that is what kick-started me into running. If I can run a marathon for her, I’m going to do it.”

Growing up in Massachusetts, the fun-loving and outgoing sisters had many similarities – including living with asthma. Jen’s case was mild, but Dee’s caused her to miss school and visit the hospital frequently. That didn’t stop her from making an impression on everyone. She was particularly talented in the sciences, and when Jen encountered her older sister’s teachers years later, they all had a clear memory of her.

“She was in your face and did not care,” Jen says while laughing. “She had no filter whatsoever. If she were thinking it, it would come right out of her mouth!”

The sisters were both skilled swimmers, but Dee’s asthma eventually prevented her from continuing with the sport. She was fortunate the hospital was close to both home and school, which allowed her to quickly get care during frequent asthma episodes. The family still hoped that newer procedures would allow Dee to manage her asthma at home more often.

Dee and Jen with their mom

As this became more difficult, and the list of the activities she could no longer participate in grew longer, she considered a bronchial thermoplasty – an asthma treatment that heats and reduces the amount of smooth muscle in your airway wall. As a result, the immune system no longer tells the throat to constrict when triggered, making it easier to breathe. Unfortunately, due to her health, Dee was not a candidate for the procedure.

High-spirited and persistent despite this setback, Dee shifted her goals to new destinations. During Jen’s senior year in high school, Dee moved to sunny Florida. She felt that the milder climate would make it easier to manage her asthma triggers. Not only did her grandparents live there, but she met her fiancé and had her daughter Olivia, who she called Liv. Dee’s pregnancy was high-risk, and during the birth Liv suffered a stroke –which resulted in cerebral palsy that affected the left side of her body.

“Dee was a tireless advocate for Liv and made sure she got all of the therapies she needed,” Jen remembers. “She would have that girl in therapy all day to make sure she got the best care.”

As Dee settled into Florida life with her fiancé and daughter, her breathing struggles continued. Her oxygen levels were frequently low. Any time her levels were close to average, she would jokingly tell her sister how well she could breathe. Though they kept their conversations lighthearted, it illuminated a constant that had followed Dee throughout her life – she was not getting the oxygen needed to live comfortably.

On December 23, 2016, Dee woke up in the middle of the night struggling to breathe. Knowing she was in the middle of an asthma episode, her fiancé called the ambulance.

Jen and Liv

The resulting brain damage was too much for her to overcome, and she passed on Christmas Eve. Her family returned to Massachusetts – her final resting place – for a celebration of life. Loved ones drove through a giant snowstorm to attend the funeral – and Jen reflects a mischievous Dee would have enjoyed putting them through one last challenge.

“So many people like me, and they all drove through the snow for this?” she imagines Dee saying cheerfully.

Dee’s memory lives on in her daughter and family members like Jen, who carry her spirit and energy. Olivia also lives with asthma, and together with Jen, they run for a better future—one where even those living with the most severe cases of asthma can receive the care necessary to improve quality of life. To help support research, education and advocacy around asthma and other lung diseases, contribute to Jen’s Lung Power Team campaign.

Celebrating Organ Donors and the Lives They Impact

Every February, National Donor Day celebrates and recognizes those who changed the lives of others through organ donation. According to Donate Life America, 113,000 people in the U.S. are currently waiting for life-saving organ transplants. Thousands of those are living with lung cancer or other chronic lung diseases like pulmonary fibrosis.

One person’s organ donation has the potential to save as many as eight lives of those in need.

Respiratory Health Association works with a number of people who have received a second chance at life through an organ donation. Each of them has dedicated their time to giving back in the hope of helping others living with lung disease.

Steve Ferkau     

“I am only here as a result of improved research and treatments into lung disease. I am a miracle of science and the generosity of my donor Kari and her family.”

 

 

 

 

man and woman outside

Tim Thornton

“It was surreal that you could go from not being able to breathe to thinking that you have a second chance with a new set of lungs. I am forever grateful to the donor’s family who made the decision to donate the gift of life.”

Read Tim’s story

 

 

 

man walks daughter down the aisle

Tom Earll

On the third morning after his transplant, Tom could see downtown Chicago from his bed. The sun rose, reflecting off the glass buildings. “I sat up and took a deep breath. I got hit with this wave of emotion, and I burst into tears because I realized that this was my new normal.”

Read Tom’s story  

To learn more about how organ donation can make an impact or to add your name to the donor registry, visit organdonor.gov.

Tim’s Climb Celebrates His Second Chance at Life

Written by Amanda Sabino with contributions from Tim Thornton

When Tim Thornton went skiing in March 2017, he didn’t think much of the fact he couldn’t keep up with his wife and daughter. He had always been physically active in a variety of sports and was used to the altitude – having previously lived in Colorado for 15 years – but supposed age was finally catching up with him. On a 7,000 foot elevation hike near Denver that same day, he completed just 300 feet. He sat on the side of the trail as his wife and daughter continued.

man and woman couple

Tim and his wife Malea on Mother’s Day 2019 shortly before his transplant.

That August, as Tim began to accept the slowdown of middle age, he went to his primary care physician with a persistent cough. A chest x-ray showed something abnormal, and a pulmonologist requested a CT scan.

It was just days before his son’s wedding when the CT results arrived, and Tim’s life changed forever. He was diagnosed with idiopathic pulmonary fibrosis (IPF), a chronic, incurable disease that causes scarring in the lungs and makes breathing difficult.

Though daunted by the diagnosis, Tim and his family remained optimistic. The wedding celebration went forward as planned. Tim describes the day as pure joy, watching his son begin a future with his new wife.

Even on a day of celebration, Tim continued to confront what his future would hold.

“It isn’t easy being told you have a terminal disease for which there is no cure,” Tim says. “The mental conflicts were enormous. In the back of my mind, I knew I had to face reality, but I also wanted to stay as positive as possible to focus on the goal of staying strong and getting better.”

Tim’s breathing continued to worsen through 2018, and although he danced at his work holiday party, by then his lung capacity was half that of healthy lungs.

Later that winter, Tim caught a virus. His lung capacity plummeted. He began 2019 on oxygen, both at work and at home. By March, his lung capacity was down to 30 percent of normal. He was put on the list to get a lung transplant.

Still, he remained optimistic. He wrote in a blog post that May, “The doctors continue to say they receive a couple of calls per day about possible matches, but they are not ‘quality.’… I am number 1 or 2 on this regional list so I am very optimistic. My health is stable…. I am thankful that my spirit and soul feel healthy and strong.”

Yet Tim found his spirit continuously tested. On May 12, he received a call from the transplant coordinator saying they had found a match. Tim checked-in for surgery that evening, only to find the transplant team had determined the new lungs were not the perfect match.

The wait continued. He knew the call could come at any time. For a transplant to work, however, everything has to go right. Even the common cold can prevent a recipient from receiving new lungs.

man getting breathing levels checked

Tim celebrates his new lungs and breathing like normal again.

“I had full faith in the system and the great people,” Tim says, describing his care team from Loyola University Chicago “You do start getting worried if everything is going to line up,” he admits.

A New Lease on Life

Dr. Dilling, Tim’s pulmonologist and clinical expert in lung transplants, would see him in the hospital halls walking around with his oxygen

tank. With a mixture of amusement and pride in his patient, he’d say, “every time I come around here you’re always walking around.”

Tim would respond with a hopeful smile and say, “Well, you told me to stay healthy.”

As Tim rested in the pre-ICU one night, the hospital bed phone rang. It was Dr. Dilling – and the normally reserved doctor sounded very excited.

man and woman outside

Tim and his daughter Lexi during “Dad’s Weekend” at the University of Illinois, shortly after his transplant.

“I think we found the perfect lungs for you.”

Once Tim confirmed he was ready, the wheels were set in motion. Half of the transplant team hurried to get the lungs in time. The other half of the team prepared for surgery.

Tim’s surgery went well, and within 24 hours of waking up his breathing was strong enough they took out the respirator. Not only was he breathing on his own, but he could even whistle. During the most challenging aspects of his recovery, this was the moment he held on to.

The roller coaster of mental challenges Tim endured has made him grateful every day. His journey with IPF and receiving a transplant inspired him to sign-up for Respiratory Health Association’s Hustle Chicago stair climb.

And every day, he’s able to exercise and train for a little bit longer. “It was surreal that you could go from not being able to breathe to thinking that you have a second chance with a new set of lungs,” he says. “I am forever grateful to the donor’s family who made the decision to donate the gift of life.”

Tim’s family will join him as part of the Loyola’s Lung Angels team for the February 23 climb at Hustle Chicago. To join Tim on his journey to fight IPF and help fundraise for lung disease research, click here.

Maureen Remembers Her Mother with Each Step

Story written by Amanda Sabino

Joan Flynn challenged herself to take the stairs whenever possible, and her daughter Maureen followed. As Maureen would pause and struggle to catch her breath, the chances of gaining ground on her mother faded. Joan was already waiting at the top stair, joking with Maureen as she had many times before.

“The stairs never get any easier, do they, Maureen?”

Maureen and her mother were best friends. They lived within walking distance of each other and even worked together at Loyola University Medical Center. They spent a lot of time together, enjoying shared loves of exercise, cooking and music – especially Bruce Springsteen.

“My brother Dan, mom and I were big Springsteen fans,” Maureen says. “The three of us would always see him in Chicago when he toured.”

Maureen always drew inspiration from her mother who, as she describes came from very humble beginnings. Joan’s parents emigrated to the U.S. from Ireland, and she lived in a house with no running water in the bathroom and few possessions. This modest upbringing kept her grounded and thankful for the important things in life as she grew up, began a career in nursing and eventually started a family. She cherished her husband, five children, nine grandchildren and her health.

“Some of the fondest memories that I have of my mom was her helping me with my babies,” Maureen recalls. The bond they shared is clear as Maureen describes how her mother would drop everything to help out when she needed it.

“I miss her so much.”

group of people smiling

Maureen Campbell (second left) and her family team “Joan’s Little Climbers,” at the 2019 Hustle Chicago stair climb.

It was early in 2017 when the family noticed her slowing down a bit. Maureen and Dan were planning the next Springsteen concert, but Joan felt she wouldn’t be able to keep up and turned down the invitation.

In July of that year, Joan was diagnosed with lung cancer. Her immediate reaction was not a question about how someone as healthy as her could have lung cancer, but about her five kids. “What am I going to tell them?” Maureen recalls her asking her physician. Joan never worried about herself.

Joan started treatment immediately at Loyola and fought valiantly, but the cancer continued to progress rapidly. When she was hospitalized in October of 2017, doctors knew there was nothing more they could do.

Maureen remembers the most difficult moment was telling her mother she had to stop radiation treatment. “You fought so hard and did everything you could,” she assured her mom.

Maureen shared the news and her brothers and sisters began gathering at the hospital. With 14 family members in the room, Joan looked around, laughed and said, “What the heck, it’s like Saturday Night Live in here!” With everyone now laughing, they played music and talked about their favorite memories.

Joan lost her life to lung cancer the next night. The funeral included her favorite people, her favorite music and bagpipes. Maureen gave the eulogy, and of course Springsteen played.

Joan’s children remember her love every day, and the injustice of her passing still marks Maureen.

woman smiling

Maureen celebrates completing her second climb in February 2019.

“Lung cancer is the number one cancer killer and the least funded. I’m still angry that this horrible disease took my mom. She did everything right.”

The two had talked about how hard her death would be for Maureen – something Joan understood well after having a close relationship with her own mother. Maureen leaned on Joan’s advice.

The loss still ran deeper than Maureen could have imagined. After learning about the Hustle Chicago® stair climb, she signed-up and began training. It helped her get through the first holiday season without her mom.

“The first year, Hustle Chicago saved me. I put all my energy into that. I over-trained. But I would have crawled up the stairs if I had to.”

When she arrived the morning of her first climb, everyone seemed to know Maureen’s story. Even before she exchanged words with the other climbers, she saw the compassion in their eyes. She walked up to the message boards, picked up a pen and knew immediately who she would write to – her mom.

Maureen felt empowered and fueled by her desire to help fund lung cancer research. “She was with me,” she describes. When she climbs, Maureen listens to the playlist they played at her mother’s funeral.

Maureen will climb for a third time in February, knowing her mom lovingly challenges her to take the stairs one more time.

Maureen honors the memory of her mom by committing to be a lung health champion and pledging to raise over $1,000 for Respiratory Health Association. To support Maureen’s fundraising for lung cancer research and RHA’s other work, click here.

children smiling together

The “Joan’s Little Climbers” team after finishing the 2019 climb.

Adam’s Marathon Journey Keeps His Friend’s Memory Alive

by Amanda Sabino

Adam Giglia and his friend Tim McCarren had just finished a half marathon in Adam’s hometown of Rochester, New York. They took a moment to look back on an inconceivable 13.1 miles.

“Can you imagine,” they said between breaths, “doing a full marathon?” The two laughed.

Adam never considered himself much of a runner, though sports have always been in his blood. By age three – much like the rest of western New York – he was in skates and playing hockey.

When the Miller family moved-in across the street during Adam’s sixth grade year, he and new neighbor Erik Miller bonded over sports. Adam and Erik were only a year apart in school, and became fast friends.

Living across the street from each other meant getting together often, which was also the case for their families.

Runner poses after finishing run

Adam pauses for a post-run photo.

Adam’s father Lew and Erik’s father Jack would often take the boys golfing. It was competitive, but always fun. Jack would sometimes talk about his glory days running while growing up in Chicago – even showing his many photos from distance races over the years.

“He was passionate about it,” Adam says.

A couple months after running the half marathon with Tim, Adam stood alongside Jack. After five years battling lung cancer, Jack entered hospice care.

Adam knew what he had to do, but the steps to get there seemed daunting. Everything he read said how challenging marathons could be. Was it possible?

His mind was set. He promised to run the 2019 Chicago Marathon in Jack’s honor.

That commitment was the ultimate currency of their friendship to Jack. Though he ran the Boston Marathon, he had never done so in his native Chicago. Adam was hopeful Jack would have the chance.

“You’re going to win next year,” he said.

In September, Jack lost his life to lung cancer. Now, Adam runs not only for him, but for his grieving friend Erik and lung cancer survivors everywhere.

“I’m committed to do whatever it takes to cross that finish line.”

Training has lived up to its reputation. He describes it as the hardest thing he’s ever done in his life. He wants to finish in less than four hours, and after months of sacrifice he’s getting close to his goal.

His friends and family will be at the marathon to support him. Tim, who has played chief motivator during training, will once again run alongside Adam. But they’ll be missing Jack.

Runners pose after running half marathon

Tim, his wife Marissa and Adam after the half marathon in Rochester.

Adam imagines Jack would want to celebrate by buying a round of beers.

“Were this 20 years ago,” he says, “he’d be waiting for me at the finish and saying, ’what took you so long?’”

Those watching the marathon can spot Adam in his custom t-shirt with Chicago Bears colors. Jack was a huge fan of the Bears.

Adam sees every step of 26.2 miles as an opportunity to raise funds for lung cancer with Respiratory Health Association’s Lung Power Team. Money raised for research may prevent someone else from going through what Jack went through.

“This run’s for Jack.”

To support Adam’s run for lung cancer research, click here.

Lauren’s Helping Kids Breathe Easier

In April 2018, 9–year-old Lauren Wilson shook hands with Senator Daniel Biss and sat down to educate him about a new law being considered in the Illinois legislature – Stock Emergency Asthma Rescue Medication in Schools. The legislation allows schools across the state to keep a supply of albuterol on hand to deal with asthma episodes and other respiratory emergencies, similar to how they keep an EpiPen on hand for allergy emergencies. Advocates like Lauren helped get the law passed in May 2018– now, they’re trying to make sure that it gets implemented. For her first persuasive writing assignment in 3rd grade, she wrote a 3-page paper on why they need to use the new law to stock albuterol in her school.

Father, daughter and senator pose during lung health advocacy meeting.

Lauren and father Jeremy meet with Senator Biss

“Why does it take so long?” That’s Lauren’s newest question for Illinois State legislators. For kids living with asthma who rely on medications like albuterol, waiting for the law to take effect impacts their ability to live well. Lauren carries her inhaler in her backpack and keeps a backup with the school nurse, but those medications are specific to Lauren. The new law lets schools keep ‘undesignated’ medication – meaning it is not prescribed to a specific person – that can be administered to anyone in respiratory distress. This is an important fail-safe in case someone runs out of medication, forgets or loses an inhaler or, as often happens, experiences breathing difficulty for the first time and hasn’t been diagnosed yet. Lauren wants her school to be as prepared for an asthma episode as she is. Lauren has been an advocate for those living with asthma for most of her life, which stems from her own experience with respiratory issues. Lauren was in and out of the hospital and emergency care as an infant. “It was the scariest experience of my life,” her father, Jeremy remembers. “When they tell you that you should say goodbye to your child after hearing she has gone into respiratory failure.”

After her respiratory failure at six months old, doctors diagnosed Lauren with reactive airway because she was too young at the time for a full asthma diagnosis. She began treatment at that time. At four years old, her pulmonologist made the expected diagnosis of asthma. Throughout this journey, Lauren’s mom, Stephanie, began researching ways the entire family could be proactive in Lauren’s care. They worked closely with a pediatrician to develop an asthma action plan and watched Lauren’s symptoms to identify her triggers. Stephanie’s research also led her to Respiratory Health Association, and the entire family got involved. Lauren’s last hospitalization came last fall. Her asthma has been mostly under control since, but it always requires careful monitoring. In the meantime, Lauren continues to participate in sports and spend time with her friends. “I feel pretty fine doing sports,” Lauren says. “I usually don’t have triggers with sports, mostly just allergies and colds.”

Stephanie reminds her, “If you really pushed, we’d give you 2 pumps of albuterol for stair climbs.” Lauren is very proud of the collection of medals she has from sports and charity events. “I keep them all around the house,” she says mischievously. “We’ll find them everywhere,” Stephanie confirms. In October 2018 RHA presented her an award for her asthma advocacy efforts. The Next Generation Advocate awards are given to young people who stand up for a future free of lung disease and to protect our clean air. Lauren keeps that award in the front of the house, where everyone can see it.

Youth advocate and policy director pose with award for efforts to support lung health

Lauren and Matt Maloney, RHA Directory, Health Policy during the 2018 awards ceremony

She also has medals for Hustle Chicago, RHA’s stair climb, and the CowaLUNGa Charity Bike Tour, which she participated in as an 18-mile rider the first weekend in August. But there are challenges that come with asthma, summer heat, and physical activity. “We didn’t go out and ride today,” Jeremy mentions. “But she did 9 miles a few days ago.” Before July’s heat wave hit the Midwest, Lauren rode a couple times a week. But as the weather got hotter, the air quality worsened and became unhealthy for people with lung disease. Now that it’s cooled down and air quality has improved, she’s back to good riding conditions. It’s just another thing her parents monitor to help keep her asthma under control.

Jeremy and Stephanie joined Lauren for their 5th year of riding CowaLUNGa. She rode 18 miles on the back of Jeremy’s bike and plans to ride the 18 miles on her own bike next year. With plenty of time to train, she’s ready for the challenge. Lauren proudly describes her bike as blue and silver. “I just learned how to shift gears on it. I went on my first hill recently, and down. That’ll make the hill on the first day not as bad,” she says.

Another milestone she’s ready for?

“She wants that big 20 year trophy,” Jeremy says of the celebratory trophies RHA gives five, 10, 15 and 20 year riders. “And I believe she’ll get it.”

Besides asking her fellow riders to join her in supporting RHA’s advocacy efforts, she offers this advice: “Get out and ride. Wear comfy clothes: bike shorts, gloves and a helmet.” To join The Wilsons in their efforts to fund asthma research, advocacy and education, support their fundraising here.

A Daughter’s Dedication Drives Stacey Woodward to Run

Denny and family

Denny and family

A Daughter’s Dedication Drives Stacey Woodward to Run

This year’s Chicago Marathon isn’t Stacey Woodward’s first, but it may be her most emotional. This marathon is dedicated to her father, Denny Wright, who passed away from chronic obstructive pulmonary disease (COPD) in December.

Stacey is the assistant news director at WBAL TV in Maryland, and a member of Respiratory Health Association’s Lung Power Team for the Chicago Marathon. She’s running for advancements in COPD research as a way to memorialize her father, who spent much of his time learning more about the disease and researching COPD treatments.

“Besides being stubborn, we’re not alike at all,” Stacey laughs of her father.

After serving in the US Army during the Vietnam War, Denny took up flying as an amateur pilot.

“He was diagnosed with PTSD after the Vietnam War, and I think flying was a bit therapeutic for him,” Stacey reflects.

As Denny flew over the Eastern Shore of Maryland, Stacey was across the country in Sacramento. There, in a city where she knew no one, she found a community of runners. In her early 20s she joined a team and began training.

When he was later diagnosed with COPD, Denny had to make several lifestyle changes. Once he was on oxygen he could no longer fly. “That really upset him,” Stacey says.

But Denny continued to seek adventure, including traveling and spending time with friends where he was “always the life of the party.” As travel became increasingly difficult, Denny’s determination and curiosity only grew. He decided to become as informed as he could about his condition, which included reading the latest research on COPD and working with his health care providers to explore additional treatment options.

Denny with a young Stacey

Denny with a young Stacey

The Department of Veterans Affairs later confirmed that chemical exposure during his time in the army had contributed to Denny’s illness, along with several other risk factors. While tobacco use is the most common cause of COPD, environmental factors and genetics also play a role.

Unfortunately, COPD research remains vastly underfunded and the role of environmental factors, including chemical exposure, in the development of COPD isn’t fully understood.

Despite Denny’s effort and attempts to receive a lung transplant, he passed away on December 1, 2017 at 70 years old.

Denny donated his body to science to contribute to the advancement in COPD research. Stacey joins him by running for the Lung Power Team and fundraising for current and future research.

When she struggles during a run, Stacey thinks of her dad—and she surrounds herself with support, including many of his friends from the VFW. There’s a certain amount of stubbornness—perhaps better called persistence—required to run a marathon, and she has her dad to thank for that.

Stacey says of the calm that she experiences after a run, “It’s rejuvenating. Running is a journey. Often I do not look forward to it, but I love the feeling after I’m done.”

To support Stacey and her father’s dedication to COPD research, donate to her fundraising.

Alex Simundza isn’t letting asthma slow him down

Alex Simundza isn’t letting asthma slow him down

Alex at CowaLUNGa

Alex at the end of a ride

Despite being diagnosed with asthma at an early age, Alex Simundza always loved playing sports. With the support of his parents and doctors he found ways to manage his asthma and continue playing low-intensity sports like baseball. By keeping his inhaler handy and following his doctor’s instructions, Alex lived an active life.

Then in eighth grade a back injury changed everything. Alex underwent surgery after surgery attempting to repair damage to multiple discs in his lower back, but nothing seemed to work. Finally in high school Alex underwent multiple spinal fusions. It seemed his athletic days were over.

For the next several years Alex found that his asthma worsened. He gained weight and found it difficult to do even basic daily tasks without triggering breathing difficulty. Cardiovascular exercise was the last thing on his mind, but he also knew he couldn’t let his health continue to deteriorate.  After talking with his doctors and conducting extensive research, Alex embarked on a low-intensity exercise plan that combined resistance training and indoor cycling.

Alex’s health gradually improved and by the time he was ready to attend college, he knew he wanted to work in health and fitness. When he found the exercise science major at Western Illinois University, he knew he’d found a career path filled with personal meaning.

Today Alex is a Health Fitness Professional at AbbVie’s Vitality Fitness Center, where he often helps other people with asthma find exercise options that don’t trigger episodes. Though living with asthma is different for everyone, they see that Alex found a way to be active, and he feels that helps him connect with the members living with their own health issues.

“Some people think, ‘you’re a personal trainer and you should be in the best shape of your life.’ But when they see that I’m just like them, they know that they can ask me any question they want.”

Alex at spin class on July 4th

When Alex found cycling, he found a sport that allowed him to be both introspective and competitive. “My dad told me that 100 might be too much for me. He said, ‘you might want to try 50 or 60 miles instead. I said, 100 is good. So my first ride was 100 miles. Pretty good,” he says with a light laugh. Alex feels that cycling and strength training have improved his health and help him manage his asthma. He also makes sure to keep in close contact with his doctor and always has inhaler with him.

Riding his bike also restored the competitive nature that he’d lost during the seven years before his final spinal surgery. Alex describes the joy in being able to train for CowaLUNGa Charity Bike Tour and give advice to other people trying to improve their overall fitness with cycling. He suggests new riders gain endurance by building a foundation.

“Put your time in. It may seem boring, but spin classes can keep you motivated.” He also suggests watching a movie, which is how he got through long indoor rides at first. Once you start riding outside, find a route that appeals to you. His other piece of advice for long rides? “Always pack the right gear,” including your inhaler if you’re riding with asthma.

Alex will follow other day riders from Gurnee into the quiet waters of Williams Bay, Wisconsin. As the ride path winds into the countryside, his thoughts will likely mirror those he’s had on many cycling tours in the past, “I keep peddling. I listen to the constant whooshing on the pavement and watch the therapeutic rotating of the wheels on the concrete. The constant buzz,” he says, “is like a metronome. It’s really peaceful.”

“I’m excited to be able to ride and support a cause that has affected me almost my entire life.”

To support Alex’s ride at CowaLUNGa and RHA’s asthma programs, visit his fundraising page.

Her Mother’s Memory Pushes Melanie to the Finish

Two women smiling

Melanie with her mother

Melanie Santarelli ran the Chicago marathon when she was 10 weeks pregnant. 

The accomplishment speaks to a toughness that Melanie learned from her own mother, Theresa, whose battle with cancer spurred Melanie to begin running. 

At 47, doctors diagnosed Theresa with stage four squamous cell cancer of unknown primary. Squamous cell lung cancer accounts for 30 percent of all lung cancers. After ruling other cancers out, doctors strongly suspected lung cancer. Theresa was a smoker for many years although she quit several years earlier on her 40th birthday. 

Melanie recalls her mother as healthy and active, and the cancer diagnosis came as a shock. 

“You think you’ve quit,” Melanie says, “You don’t realize that these effects carry with you even if you change the behavior. The body just doesn’t turn around like that.” 

Despite the diagnosis, Theresa continued her work as a family and child therapist, working long hours to help families in crisis. Melanie recalls that despite a mentally and emotionally demanding job, her mother always made time for her family. 

Theresa endured rounds of radiation and chemotherapy, always putting her family ahead of herself. She experienced terrible pain as the cancer spread and hindered her ability to walk. 

After three years of struggling, Theresa passed away, just four months before Melanie’s wedding. 

“She was and is an absolute inspiration,” Melanie says, “She never wanted to give up.” 

Woman with stroller and toddler running

Melanie running with her children

Melanie took up running as a way to process the loss. Theresa was a sprinter, and Melanie felt connected to her as she ran up and down Chicago’s lakefront. 

This year Melanie will run the Bank of America Chicago Marathon as a member of Respiratory Health Association’s Lung Power Team. The funds raised benefit the Association’s work to advance lung cancer research and help people quit smoking. 

Though this is her third marathon, Melanie continues to set the bar higher for herself and hopes to finish with a 4:20 time. During her most difficult training sessions, the memory of Theresa’s determination pushes her toward the finish. 

“The training is harder than the marathon,” Melanie explains. “The marathon is the reward at the end. If you can get the through the training, you can get through anything. That’s the mental toughness.” 

Now a mother herself, Melanie feels closer to her mother than ever. Whenever she runs, she mentally checks in with her mom and updates her on her life. 

“She gave me this body, and I’m able to do this because of her. She’s my motivator and my strength.” 

To support Melanie Santarelli and lung cancer research, donate to her fundraising campaign.