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 like her living with asthma who rely on medications like albuterol, waiting for the law to take effect impacts their ability to live with asthma. 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.

Tom Earll is Making Memories with Every Breath

When Tom Earll’s daughter, Katy, planned her wedding, she easily chose the venue and the dress. But one heartbreaking fact loomed over it all: Katy didn’t know if her father would live long enough to walk her down the aisle.

“It was very possible that I was going to die and not be at her wedding,” Tom explains. “I kept looking forward to that day. Even at the very end when I was very sick and could hardly get off the couch.”

At that point, Tom had been suffering from idiopathic pulmonary fibrosis for 10 years. He was on the transplant list, but his doctor said he had a maximum of two months to live.

As he lay in bed those last two months with his wife caring for him, Tom found strength in his daughter’s future. He fought to be present and create a memory he and his family could cherish.

Man holding baby

Tom with his grandson.

Years before, when he was first diagnosed, Tom only had to wear oxygen while exercising, but by the time of his daughter’s engagement he had to carry an oxygen concentrator and tanks of oxygen wherever he went. As his conditioned worsened, he needed the concentrator even while sleeping.

Tom’s path to this point was not direct: a misdiagnosis of asthma delayed his treatment for years. It wasn’t until Tom sought the help of pulmonologists at Loyola Medicine that he finally arrived at the correct diagnosis and was put on the transplant list.

You have to be “sick to enough to qualify, but healthy enough to qualify,” Tom says, acknowledging the difficult decisions hospitals must make when deciding who receives a transplant and who doesn’t.
Months passed while Tom waited. Katy’s wedding ticked closer.

Then one night, while Tom rested in bed with his breathing labored, the phone rang. The hospital had a pair of lungs for him. On December 8, 2015 he received a bilateral lung transplant.

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,” Tom recalls.

man walks daughter down the aisle

Tom walks Katy down the aisle.

In the end, Tom was able to walk his daughter down the aisle, making a dream come true for them both. “I danced like a fool at her wedding,” he laughs, “and there was always a chair close by so I could sit down and rest.” Because while Tom emphasizes the joy of making new memories without difficulty breathing, his road to recovery is long and some things in his life will never be the same.

“I grew up swimming and boating, and I was in, on or under the water most of my life. I can’t do that anymore. Some days you struggle to win the mental battle. But I always wanted to play the guitar, so instead, I do that now.”

In addition to learning guitar, Tom has taken up a few athletic challenges. Just nine months after his transplant surgery he ran his first 5K with friends and family cheering from the sidelines in custom t-shirts that said “Tom’s Second Wind.”

This year, he saw that Loyola had created a Hustle Chicago team to benefit the lung disease research supported by Respiratory Health Association.

That’s how Tom wound up joining “Loyola’s Lung Angels” and practicing for the climb in his local municipal parking garage, which has 4 floors of stairs. He goes up and down 20 times to reach 1600 steps.

Of the race and the rest of his recovery, he says, “I’m going to keep going at a steady pace.”

To support Tom’s efforts, visit his fundraising page.

The Night that Fuels Nicole’s Fight Against Asthma

Nicole Brown was at home when her one-year-old baby Nicholas began to cry. As hours passed and nothing soothed him, Nicole knew that it was time to call the doctor.

A team of two doctors and a nurse quickly realized that Nicholas was struggling to breathe. They began breathing treatments, checked his pulse, and recommended transferring him to a nearby hospital.

After a final breathing treatment, Nicole left for the hospital. “We just made it,” she describes. There, the doctors and nurses uncovered what Nicholas had been trying to tell them – his left lung had collapsed.

Doctors observed him around the clock, unsure what caused the collapse. The possibility of infectious disease meant Nicole wasn’t able to hug or physically comfort her son.

Woman holding baby in hospital with mask and gown on

Nicole holding Nicholas in the PICU

The PICU moved Nicholas to an isolated room to reduce the threat posed by possible infections. The doctors, nurses and Nicole all wore paper gowns and masks whenever they stepped inside.

With protective garments in place, Nicole was allowed to hold Nicholas again – but only while doctors worked to remove the mucus accumulating in his lungs. Nicholas tried to scream, but couldn’t due to his weak breath. Tears streamed down his face as Nicole held him.

“It was awful. I didn’t want him to hurt, but I knew that I needed to keep him still for the doctors to help him,” recalls Nicole.

Tests soon revealed that Nicholas was not infectious and had responded well to the breathing treatments and the suction from his lungs. The doctors were surprised by how quickly Nicholas’ condition improved and finally arrived at his true diagnosis – asthma, a chronic condition that would have to be managed for the rest of his life.

That was eight years ago. Today Nicole, an engineer at Exelon, is preparing to climb her fifth Hustle Chicago and training five times a week. Her son’s asthma and mother’s COPD are at the forefront of her mind.

Boy smiling in a school photo

Nick in a recent school photo

“Nicholas’ asthma has definitely changed my perspective. I grew up with my parents smoking and I thought it was fine.  I also didn’t know that there are different inhalers– maintenance, preventative and rescue.” Nicholas now takes his maintenance inhaler twice a day. His rescue inhaler is there for him when he needs it.

Nicole hopes to have her son waiting for her at the top of the Hancock.

“I think about the people I’m doing it for, knowing that they can’t physically do what I’m doing. That helps push me more.”

Join us and support those affected by asthma and COPD. Donate to Nicole’s climb here.

Matt Cantu Runs for His Family

Matt Cantu has lots of good reasons to run with RHA’s Lung Power Team, but initially, he was worried about fundraising.

Now, he’s over 75% of the way to his $1,500 goal.

His first donors were his wife’s parents. Then, Matt put out a request for donations on social media, but he did more than just copy and paste a link. He made his posts – including the message on his Lung Power Team fundraising page – a testament to his decision to run the Chicago Marathon.

“Make sure you write something about why you care,” Matt advises.

Matt is as green to marathons as he is to the world of fundraising. But his reasons for running are rooted in respect for family and his health. Remembering the why helps him tackle these new challenges.

“If you’re not listening to anything while you run, you play things in your mind. It’s easy to give up until you remember all of the reasons why you’re doing it. It helps you to keep going.”

His reasons include his wife, Megan, who lives with asthma and sarcoidosis. Sarcoidosis involves collections of cells that inflame organs in the body, including the lungs. Four years ago, she struggled to breathe. Her symptoms improved dramatically with medical care and a healthier, more active lifestyle.

Although her experience isn’t typical of many people living with sarcoidosis, and she still has both conditions, she’s running 5Ks now.

When she first invited Matt to join her last year, running was painful, but he continued to work hard to improve his running times. Now Megan – who Matt describes as his best friend – is always there to support him for his races.

Although racing is a fun challenge and a bonding activity for them both, they carry a sense of responsibility to stay healthy for themselves and their family – because Matt also runs in remembrance.

Megan’s grandfather, Robert E. Lundberg, lost his life to lung cancer last June.

“He was a Vietnam Vet; that was something that he was really proud of. He wore his Vietnam hat every day; he walked the lifestyle of a soldier. When that disease took over him… to see his body just go down…” Matt trails off in thought.

Robert was a longtime smoker. Though he battled bravely, his health continued to deteriorate. After witnessing this painful progression, as well as the decisions of other family members to become healthier and quit smoking, Matt decided he wanted to get more fit. He believes that if more people witnessed a loved one go through what Robert did, they would make the same choice.

“He went from a really strong man to someone who couldn’t do anything. It was a sad thing, but I always try to learn from every situation that I’m in.”

Matt personalized his Lung Power Team fundraising approach by sharing Megan and Robert’s stories. This helped his network connect their support to RHA’s efforts, such as helping people quit smoking through Courage to Quit and funding lung cancer research. Many have already joined Matt in making a difference as he prepares to run the Chicago marathon on October 8, 2017.

Visit Matt’s fundraising page to support his goals.

Spots for the Bank of America Chicago Marathon are gone but you can still make every step of your next race count. Join the Lung Power Team for some great benefits. You can help RHA achieve healthy lungs and clean air for all!