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Patient Stories

Research offers patients and their families hope. This is particularly true for patients with lung disease. There are very few cures, not nearly enough therapies that extend lives or ease symptoms for patients with lung disease, and too few effective therapies that come without significant side effects.

The development of drugs to treat pulmonary hypertension illustrates the challenge. Twenty years ago, there was only one FDA-approved drug for patients with pulmonary hypertension, and it was a lifesaver.

Today, there are 14. But not everyone with pulmonary hypertension responds to these medications, and those who do often suffer debilitating side effects.

The stories of these patients, and so many others, are a powerful reminder of why we can’t afford to lose young investigators.

Building a future where patients breathe better


Mary Kitlowski

"Research is our best hope," Mary believes, and that is an important message she wants everyone to hear.
- Mary Kitlowski, PCD Activist and founder of "Running On Air", a campaign to educate others about lung diseases.

Meet Isabel Stenzel Byrnes

“I went up to 11,000 feet where I was breathing just fine!!! I feel so grateful for all the researchers who have indirectly allowed me to reach such extraordinary highs—literally and figuratively—in my life.”
Isabel Stenzel Byrnes, Cystic Fibrosis Patient-Advocate

Meet Trina Massey Davis

“Sarcoidosis may be a ‘snowflake disease,’ but living with it hits like an avalanche. We need your help to dig us out.”
Trina Massey Davis, Sarcoidosis Patient-Advocate

Meet Vijai Sharma

“Science has removed the shackles that come with viewing COPD as a completely irreversible, progressive, and horrible disease.”
Vijai Sharma, COPD Patient-Advocate

Meet Alex

“When I was little, I used to think I was so much different because I had asthma so I would say—you’re not different than anyone else. You’re normal. And you don’t have to worry, your asthma will most likely get better as science gets more advanced, there’ll be better medicines and you’ll have it better.”
Alexandra, Asthma Patient and Ninth Grader

Meet Debbie Drell

“Research kicks the door down and lets patients walk through it.”
Debbie Drell, Pulmonary Hypertention Caregiver-Advocate

Meet Betsy Glaeser

“We know that there is no cure for NTM, and we hope that research may yield effective answers, particularly effective drugs for NTM.”
Betsy Glaeser, Nontuberculous Mycobacteria Activist

Heather Snyder

“We need research to find medications that stop the progression of pulmonary fibrosis and research to find a cure. Patients need hope and research is hope. I want to know that the next generation of patients can survive.”
Heather Snyder, Pulmonary Fibrosis Activist and Double-Lung Transplant Recipient

Maki Inada

“If it weren’t for the research of doctors… I don’t think I would still be here today. If I do have yet another recurrence, I know that there are lots of researchers working on the problem of tackling the ever-present resistance mutations that pop up while on inhibitors. I feel very fortunate that this work is being done.”
Maki Inada, Lung Cancer Activist

Len Geiger

“I am grateful to the many researchers and clinicians whose scientific and clinical innovations made my recovery possible. For me, research is the only answer for the millions of patients worldwide struggling to breathe daily.”
Len Geiger, Alpha-1 Activist and Double-Lung Transplant Recipient

Joanne Sperando-Schmidt

“There was only one drug on the market for pulmonary hypertension when I became ill in 2003. Thanks to research, there are now at least fourteen approved medications for this illness. I am managing my illness, hopeful that big strides in understanding the disease will continue.”
Joanne Sperando-Schmidt, Pulmonary Hypertension Activist

Laura Steves

“There is much more to learn about asthma and its many socioeconomic, demographic, and environmental factors that make it such a varied disease.”
Laura Steves, Work-Exacerbated Asthma Activist

Heather Kirkwood

“Without participating in research, I know for sure what the future holds. Research is the only thing that can change that future. It gave me back some of the bittersweet unknown about the future other people take for granted. It gave me back my hope.”
–Heather Kirkwood, Hermansky-Pudlak Syndrome Activist


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