We’re paying special attention to Asthma Awareness Month this May to shine a spotlight on what should be done to help all who cope with asthma daily.
According to the Centers for Disease Control (CDC), 25 million, or 1 in 12 people, have asthma. That number has been steadily growing for the last decade. The CDC recommends more education to help asthma sufferers and their caregivers avoid triggers.
The American Lung Association reports that nearly 37 million live with chronic lung conditions. They also estimate that millions go undiagnosed each year.
In observance of Asthma Awareness Month, Flyp Nebulizer and Right2Breathe, a not-for-profit organization founded in 2014, are announcing their new partnership to help everyone with chronic lung conditions. To advance Right2Breathe’s mission, Flyp Nebulizer will donate 5% of all sales to them during the month of May.
To mark the occasion, Tom Bonaventura, Director of Marketing at Convexity Scientific/Flyp Nebulizer, interviewed Joe Morrison, Right2Breathe’s Co-Founder and CEO, to learn more about how that organization can help you and what resources they provide nationally. For 10 years, Joe has been a COPD patient and caregiver. He is also a professional drag racer and member of the National Hot Rod Association (NHRA).
The following interview has been edited for clarity and length.
How Right2Breathe Makes a Difference
Hi, Joe. Please tell us a bit about Right2Breathe. Specifically, why did you start Right2Breathe?
Thanks for speaking with me today, Tom. My dad’s journey with COPD inspired Right2Breathe. Since my dad had lost more than 50% of his lung function before he was diagnosed, we focused heavily on COPD awareness as well as early screening and detection.
We hoped to help other people live a better quality of life and longer if the disease did not progress so far before they got diagnosed.
As we began doing lung screenings, we found that people wanted to share their stories with us and that there was a real need for additional education. So, we quickly transitioned from screening and awareness to patient outreach and education. In addition to asthma and COPD we also focus on lesser known lung diseases such as pulmonary fibrosis, pulmonary hypertension, and alpha-1 (antitrypsin deficiency).
What makes Right2Breathe different from other breathing disorder organizations?
We were founded on the basis of a patient’s and a caregiver’s experience. Our organization is made up of folks who have direct connections with people living with lung disease. Our director of education has asthma.
What really makes us different is our belief that people can overcome great obstacles in life when they use their passion to inspire them.
With my dad, we used his love for car racing and drag racing to motivate him to go to pulmonary rehab and take his medication consistently. He also needed to change his diet and his life habits. Those are the things we all struggle to change, but you’re more willing to do so when you want to continue activities you love.
Right2Breathe helps patients to get the most out of their lives. This is primarily because we frame our education from the patient’s perspective in a relatable way.
Right2Breathe and Flyp Nebulizer: Stronger Together
How do you think partnering with Flyp Nebulizer will benefit Right2Breathe?
The partnership helps to fulfill Right2Breathe’s mission, which is to support people living with lung disease enjoy more of the things they love. Specifically, Flyp Nebulizer offers a convenient tool to help those with breathing disorders stay mobile and active.
How do your other partnerships help people with breathing disorders?
One of the more successful partnerships has been with NDD Medical Technologies. They provide top-notch spirometers to measure lung function and testing. What we’ve found is that respiratory therapists and nurses, who volunteer at our screening events, have been able to provide rather accurate numbers for people to take back to their doctors.
In addition to grant money provided by Novartis Pharmaceuticals, we’ve received sponsorship money from Sunovion Pharmaceuticals for the outreach events that we’ve held. They understand the value of the work that we’ve done, and they want to see that work continue.
For us, a great partnership shows commitment to patient well-being and empowers the patient.
Asthma and COPD Screening and Awareness
How do you think screening for breathing disorders could be improved?
Screening for breathing disorders can be challenging for some patients who can’t take deep full breaths. So, I don’t know that you can make the testing better, but we need more testing. That’s the key to increasing effectiveness.
Personally, I would love to see spirometry testing given to individuals during their annual physical if they meet a certain set of criteria. For example, if you worked in dirty industrial conditions. Sadly, spirometry is not done regularly. Even some folks diagnosed with COPD have never had spirometry, which to me is mind blowing.
What would be the benefit of widespread testing?
Certainly, we would catch lung disease earlier. A number of years ago, someone expressed one of my favorite quotes, “I’ve got good news and I’ve got bad news. The good news is that our respiratory systems are so robust that it takes a major decline in function before you realize that there’s a problem. The bad news is that our respiratory systems are so robust that it takes a major decline in function before you know it.”
Most people with COPD can look back and say, “Oh, I think I know when it started.” But it’s years before they get diagnosed because they think, “Oh, I’m just getting older. Or I’m out of shape. Or I’ve just had this cough that just doesn’t seem to go away.” People tend to adjust to their new normal.
So, if lung function testing was more widespread, we’d be picking it up earlier and we’d be diagnosing it more accurately.
Other Breathing Disorders that Need Attention
Typically, when we talk about breathing disorders, we refer primarily to COPD and asthma. Do you think that we’re not giving enough attention to other breathing disorders?
Yeah. In a simple answer, I think that breathing conditions in general are underserved. That’s one of the reasons why we started Right2Breathe.
Too many times breathing disorders are viewed as something that a person kind of did to themselves. COPD, for example, is thought of as a smoker’s disease. It’s a cause but not the only cause. Some people on oxygen never smoked; it may have been environmental.
I think this stigma has a lot to do with it. Some patients might stay silent because they feel guilty about their condition. I disagree with that. We all do things that aren’t necessarily good for us, but I don’t know too many people who wake up in the morning and say I’m not going to do the best I can today. So, I think that’s the reason why lung diseases are underserved because people don’t use their own voice to advocate for themselves.
Are there any other breathing disorders that really don’t get enough attention?
For sure. My dad was also diagnosed with pulmonary fibrosis. There’s also idiopathic pulmonary fibrosis; they don’t know what causes it. My dad’s pulmonary fibrosis was from asbestos scarring because he worked as a plumber around a lot of asbestos-insulated pipes. That’s what made his COPD particularly severe.
Technically, pulmonary fibrosis scarring is a separate disease from COPD even though it’s obstructive. There is no cure for this. People need to know about pulmonary fibrosis and pulmonary arterial hypertension (PAH)—two of the lesser known lung diseases.
Goals of Right2Breathe
Can you tell us more about the Right2Breathe Project?
What we want people to know is that if you become increasingly short of breath, that is not a normal sign of aging. If you feel yourself becoming short of breath, take action. Go talk to your doctor.
Honestly, if you take action sooner and begin to manage your condition, you can have a better quality of life for longer. That’s what the Right2Breathe Project is all about.
Do you have an audacious goal for the project?
Yeah, I guess an audacious goal is something that seems impossible. Yet, in 1963, landing on the moon was seemingly impossible. That said, what I would love to see is a world where all preventable cases of lung disease are prevented and the people who do have lung disease receive the best possible treatment so they can continue to live fully.
Tell us more about the Burnouts for Kids Project and is it nationwide?
Burnouts for Kids has been regional so far. The program is designed as an education, awareness, and prevention program in response to nicotine addiction. We help kids chase their dreams and find their passions in life. We never want them to lose opportunities due to COPD.
During the past 10 years, vaping has become a very big problem among youth. Kids as young as middle school get their hands on older siblings’ or parents’ vapes. So, they become addicted to nicotine even though they’re not smoking traditional cigarettes. Often, people who start vaping end up smoking cigarettes later. Vaping also delivers a high concentration of nicotine that causes addiction to happen much faster.
We share my dad’s recovery story about when he was able to go racing again with me.
We give presentations at locations where I’m racing as a professional drag racer. We bring the race car and that’s why it’s named “Burnouts.” That’s the beginning of a drag race. As a race car driver, I heat the tires up and then back up to the starting line before we go ahead and race. We bring the race car to the schools and talk about science and racing, and about what nicotine addiction can do to prevent you from chasing your dreams.
We’d love to expand Burnouts for Kids nationwide if we find partners who are willing to help us fund the expansion program. Currently, we mostly offer presentations in New Jersey and eastern Pennsylvania.
How have schools responded to the Burnouts for Kids Project?
School administrators have embraced it enthusiastically because they recognize that vaping is a major problem. They’re trying to prevent it but it’s hard to detect. We provide the program to them at no cost.
During presentations to students, there are certain times when you can almost hear a gasp in the room. They wake up to the fact that maybe they shouldn’t believe the advertisements that vaping is completely safe. To make it educational, we show them tobacco ads from the 1930s and ‘40s which gets them to understand the power of advertising so they can make informed decisions in their lives.
What other education programs would you like to mention?
We’d like people to know about our Pulmonary Chat/Virtual Patient support groups (on Facebook). People living with lung disease often have mobility issues. This program reaches them in their homes so that they can improve their level of mobility.
On Facebook, we host alternate meetings focused on asthma or COPD as well as some other breathing conditions. It’s a place where people with lung disease can go to speak with other people dealing with similar challenges and share success stories. They also receive education relating to their condition so that they can make improvements in their lives.
Another great resource is a patient community group of approximately 2,600 participants through Health Unlocked. Patients or caregivers can go to Healthunlocked.com/COPD-friends to interact with and get support from others who have COPD. Right2Breathe provides the educational content and moderates that group.
Advice for People with Asthma or COPD
What would you say to caregivers of people with respiratory conditions?
Recognize that sometimes the patient doesn’t want to feel like a burden even though they need your help. It isn’t that they don’t want the help; they don’t want to have to have the help. Remind the people whom you’re caring for that it’s an honor and a privilege to care for them, not a burden. That changes the conversation.
Being a caregiver isn’t easy. I’ve been there with my dad. We’re on the road with 8 oxygen bottles in the truck to last for less than two days. It’s hot. My dad started to struggle and became short on patience. It gets difficult and stressful at times.
Looking back, now that he’s gone 4 years already, I would gladly accept that stress to have him back.
Especially for folks with lung disease, whatever you do, don’t ask them to hurry up. They’re already going as fast as they can. You might even need to tell them to slow down. When my dad was rushing to the car, he would actually make himself out of breath by rushing. I used to tell him, “The slower you go the faster you get there.”
Any advice for those living with breathing disorders, especially persons who want to stay active and healthy?
Always follow your doctor’s orders and treatment plan. Nevertheless, one of the better treatments for COPD and most lung diseases is exercise. Keep moving. With lung disease, the temptation is to sit to stay where you can breathe. As your muscles decondition, however, it’s harder to maintain a healthy blood oxygen level. Pulmonary rehab works wonders for COPD. There’s no substitute for eating right and exercising.
In fact, if you can’t keep moving, that might be a sign of an early exacerbation. Don’t let the exacerbation sneak up on you; don’t be a hero. If you don’t feel good, call your doctor.
Increased Awareness for Breathing Disorders
How would you like to see breathing disorder awareness and education change over the next few years?
Let’s talk a bit about asthma. Many people with asthma use their rescue inhaler so often that they don’t realize that their asthma may not be well controlled. There might be other treatment options that they should look into. Many times, if you’re struggling regularly, it’s easy to accept that as normal life. It doesn’t have to be that way. We’re not selling or advertising any medications, but it’s something you should discuss with your doctor if you’re frequently reaching for your rescue inhaler.
How has Right2Breathe been received in the National Hot Rod Association family?
We’ve been welcomed with open arms at many levels: the fans, the race teams, and the executives of the NHRA. The association realizes Right2Breathe helps fans. Many are current or former smokers, or work in environments that make them prone to COPD. As a result, many fans are in a risk group, and the NHRA wants their fans to be healthy and able to enjoy the sport that they love.
How People Can Get Involved
How can people donate to your program or help out?
Like most non-profit organizations, we are overworked and understaffed. We’re an all-volunteer organization. Overhead is extremely low. I don’t take a salary from Right2Breathe. Whatever money comes in goes right to the programs.
To support us, go to the donate page on our website or to our Facebook donation campaigns. We’re listed on Candid; they make sure that non-profits operate ethically.
The donate portal provides lots of options. People can choose to pay the credit card fees for us. Anyone can donate in honor of a loved one who has passed or include us in their will.
How can people/organizations partner with you?
Organizations can go to our Donate page on our website. They can also find us on social media: Facebook (@Right2Breathe.org), Twitter (Right_2_Breathe), and Instagram (right_2_breathe).
If you reach out, you’ll get a personal response. Members of our team and I check our Facebook messages regularly.
Corporations or organizations interested in partnering with us can contact us via our website’s Partnership page or call us at 844-677-7223.
We extend our thanks again to Joe Morrison. We consider it an honor to partner with Right2Breathe to help all with asthma, COPD, and other breathing disorders live fuller lives.