COPD360 Community Engagement Committee

The COPD360 Community Engagement Committee (COPD360CEnCo), established September 2020, was created to provide the voice of patients and caregivers to all of the COPD Foundation’s efforts, and to support its interactions with other healthcare and advocacy organizations.

COPD360CEnCo is launching alongside the patient-centered Digital Health & Therapeutics Accelerator Network (COPD360Net), which aims to accelerate the development and implementation of novel therapies, medical devices and digital health tools that treat and prevent the progression of COPD, bronchiectasis, and nontuberculous mycobacterial (NTM) lung disease.

Patient and caregiver involvement in governance and education is the model on which the COPD Foundation was established. With that central goal, the Foundation has built trust within its membership and related stakeholder groups.

The structure for the COPD360CEnCo supports the development of COPD360Net, while enhancing the COPD Foundation’s regular practice of engaging individuals with COPD, their caregivers, and families.

COPD360CEnCo pledges to:

  • Gather input from our patient and caregiver community
  • Advise on priorities that are important to patients and their families
  • Provide input into all aspects of COPD Foundation patient engagement
  • Ensure the interests and safety of patients are always our first priority in everything we do

The diverse backgrounds of members of COPD360CEnCo ensures a wide variety of unique experiences contribute to progressing the common cause: educate, empower, and engage individuals with COPD and related lung conditions to improve quality of life of all those who are affected by the disease, encourage participation in clinical research, and promote the acceleration of development of new and more effective therapies.

COPD360 Community Engagement Committee Members:

Karen Erickson (Co-Chair, CA)plus

Karen is an impatient patient, advocate, and Learning & Development Professional. The drive to create innovative solutions for patients with rare disease is the origin of her work in the biotech industry, and of her employment and voluntary positions in rare disease advocacy.

Karen’s experience in the biotechnology arena as a performance consultant, training manager, clinical operations manager and process development professional armed her with the appropriate skill set to develop strategies for stakeholder engagement and meaningful metrics to evaluate and drive success.

First-hand experience as a patient in the AATD/rare disease and COPD arenas solidified the mindset and brought her focus to engagement methodologies to drive patient-centered research and outcomes, both in rare and common chronic disease.

Linda Walsh, BS, TTS (Co-Chair, FL)plus

Linda Walsh is the Foundation’s Chief Mission Officer and leads the rebuilding of COPD360coach, the peer health coaching support arm of COPD360Net. Linda directed the C.O.P.D. Information Line from 2011 until 2019 and under her leadership the Information Line Associates were rigorously trained as peer health coaches, supplying integral support for many Foundation research initiatives. These included the CAPTURE Study, the COPD and Pneumonia Study, the iPArTNER Study, the O2Verlap Study, the PELICAN Study, the Patient-Powered Research Network, and the Pulmonary Education Program. Linda is passionate about educating, empowering, and engaging all stakeholders of the COPD community as many of Linda’s family members are directly affected by the disease.

Linda has over 25 years of experience in both the profit and not-for-profit sectors in strategic and financial planning, securing corporate funding and sponsorships, and enhancing operations and customer service.

Linda received a Bachelor of Science in accounting from the University of Maryland, College Park and is a member of the Board of Directors of the American Sleep Apnea Association and the Lung Transplant Foundation. In addition, she is certified as a Tobacco Treatment Specialist.

Jean Rommes, BA, MS, PhD (COPD360Net Liaison & State Captain, IA)plus

Jean is currently a patient advocate and consultant. Before retiring from the position in December 2009, she was the President & CEO of Innovative Industries in Creston, IA. Innovative Industries is a non-profit organization that provides vocational and residential services and support to people with disabilities.

She has continued to be employed part-time by CARF International as a peer surveyor. CARF is an international accrediting organization recognized by Medicare and other health care systems around the world.

Jean has a Ph.D. in Higher Education Administration from Michigan State University, an MS from Syracuse University and a BA from Michigan State.

She has been an advocate for people with COPD for over 10 years, beginning in 2007 with an article that was printed on the front page of the NY Times and an accompanying video that tells her story (available on YouTube).

Jean was a member of EFFORTS, an on-line advocacy and education listserv and website, and have served on that Board since 2008. Her affiliation with the COPD Foundation began in 2008 when she met Founder, John Walsh at a conference and has been involved ever since.

She has helped plan and organize a number of COPD conferences sponsored by the Foundation; been a State Captain and participated in legislative events like IMPACT for many years; member of the BRIDGE Project; member of the Medical and Scientific Advisory Committee; Co-Chair for the PPRN Board; Principal Patient Investigator for the RELIANCE study; was recently named as an Executive Committee member for COPD360Net and as Patient Liaison to this Committee.

Jean has been involved in a variety of other related activities, including serving on the Board of the American Lung Association in Iowa, and planned the Lung Force Expos for both Iowa and Nebraska. Additionally, she participated in the COPD National Action plan development and continuing education and advocacy activities.

Jean knew she had COPD in 1985 and was formally diagnosed in 2000 at 56. She made a huge lifestyle change in 2003 that resulted in significant weight loss and getting off O2 completely for nearly 10 years. Currently she uses O2 for most activity.

Jean has three adopted children, all girls, adopted when they were 4, 5, and 6; they’re now 45, 46 and 47; five grandchildren and one great-grandchild. She enjoys reading, opera, tv, wine, visiting with friends (mostly virtual now, unfortunately), being active in her church and cooking very occasionally.

Kenneth Benson, BS (State Captain, CA)plus

Kenneth (Ken) Benson considers himself a "jack of all trades and a master of some" who refers to his career as a long and winding road.

After graduating from high school, he enlisted in the U.S. Army. Upon completion, he entered college where he earned a Bachelor of Science degree. With a degree in hand, he traveled to Detroit and took a job in a record distributor warehouse. That started a 20-year career in the recording industry culminating in a move to the West Coast and an office in the Capitol Records Tower.

Following that, he had a 25-year career in the financial services arena. During this time he became involved in public service through the Rotary Club and the YMCA and, following his diagnosis of severe emphysema and alpha-1 antitrypsin deficiency, the Alpha-1 Association.

Ken currently serves as a California State Captain for the COPD Foundation in addition to being involved with the Veterans Administration's genetic research program. He also serves on his homeowners' association's Board of Directors.

He sums up his life with this quote from Ralph Waldo Emerson:

"To know that even one life has breathed easier because I have lived. That is to have succeeded."

Valerie Chang, JD (State Captain, HI)plus

Valerie (Val) is currently the Executive Director of the Hawaii COPD Coalition,, which she founded in 2007. Prior to that, she was a part-time district court judge in Hawaii.

Val has been active in the COPD community to varying degrees since her diagnosis at age 42 in 2000. She has moderate to severe emphysema from no known cause. Val is vice-chair of the US COPD Coalition and has participated in PCORI (Patient Centered Outcomes Research Institute) as well as CMMRP (Congressionally Mandated Medical Research Program), representing COPD and lung conditions.

She has also been involved in the COPD Patient Powered Research Network (PPRN), as well as the Coalition for Tobacco Free Hawaii. Val has met with local and national leaders about COPD and lung health issues for many years. She has partnered with pharmaceutical companies as a patient advocate and has been active with the American Thoracic Society (ATS) and the American Association of Respiratory Care (AARC) as a patient advocate.

Her father died in 2020 at age 95, at least partially from complications of chronic bronchitis, which made the last 5 or so years of his life, in his words, “lousy.” He was also a lifelong non-smoker. Sadly in the 20 years since her diagnosis there hasn’t been as much progress in treating COPD as she had hoped.

Val has a husband and two wonderful children in their 30s. When the global health permitted, she loved traveling and dining out. Now she is re-discovering the joys of cooking, including the wonders of the Instant Pot, unglazed Clay Pot, gardening, and yes, even sewing.

Caroline Gainer, BA, MA (State Captain, WV)plus

Caroline is a retired educator and a retired jewelry coordinator for a large box store, now embarking on the third career of her life. Caroline actively advocates for people with COPD and participates in research that will bring relief and someday a cure for those suffering from lung disease and injury.

When she was diagnosed in 2013, she began to research what the disease entailed and what treatments were available, which she found woefully lacking. This drove her to become a member of the COPD Foundation and a State Captain from West Virginia. In this role, Caroline hopes to help elevate the care for COPD patients in her community and create public awareness of the disease. It is her hope to get elected officials to take actions that will promote the well-being of local COPD patients.

As a COPD advocate, she has met, called, sent letters, and emailed her elected officials. Additionally, she has participated in COPD research opportunities such as the COPD PPRN, signed up for COPD360Social, and has spoken to her family and friends about COPD.

As a State Captain, Caroline's interests include participating and promoting research opportunities to help find a cure, and connecting others in the COPD community to the resources available so they can live healthier and fuller lives. She is also interested in working with state, local, and national officials to improve COPD Policy.

Mary Kitlowski, BAplus

Mary is the founder and president of Running On Air, a nonprofit with an emphasis on advocacy, education, and reform around supplemental oxygen in particular. She is also a soon-to-be retired management and program analyst.

Mary was diagnosed with bronchiectasis at the age of 17 and this led to the diagnosis of primary ciliary dyskinesia (PCD). PCD is a rare genetic disorder that affects the cilia, the small hairs that line the lungs and sinuses, causing them to not work properly.

It was not until her 40's, when she was prescribed supplemental oxygen, that Mary became an advocate. She started Running On Air in October 2014 to raise awareness of lung diseases, rare diseases, and supplemental oxygen issues.

More recently her attention has been on supplemental oxygen education and reform. She created a Portable Oxygen Concentrator (POC) Guide with a POC comparison chart to help patients better pick the POC that best fits their needs and oxygen requirements. She organized a listening session with the U.S. Food and Drug Administration (FDA) and patient advocacy groups to discuss the concerns and limitations of FDA-approved POCs and non-FDA-approved POCs, often called "noncentrators."

She has also been working with the American Lung Association (ALA) and other advocacy groups to make members of Congress aware of the issues supplemental oxygen patients face, and to get support for the Supplemental Oxygen Access Reform (SOAR) bill.

David Reynolds, RRT, EMT (State Captain, NY)plus

David (Dave) Reynolds is a New York State Captain for the COPD Foundation and a founding member of the Foundation's Diversity, Equity, and Inclusion (DE&I) Council.

Dave, a tenured health care professional and advocate for the COPD community, spent the last few years working as a Respiratory Therapist and currently works as a Community Coordinator at Sidney Emergency Medical Services in upstate New York.

He believes that hearing what's not being said by a patient and listening for the underlying questions and concerns are essential parts of the health care professional's job, which helps him be a better health care professional and patient connector.

"It's not just important to measure the disease, but also how the patient feels, functions, and survives," he noted.

Dave graduated from Upstate Medical University in Syracuse, New York, with an AAS degree in Respiratory Therapy, and completed his post-graduate studies at Binghamton University in New York. He also trained as an Emergency Medical Technician and has experience owning a home oxygen therapy business.

In 2006, David became a District Governor of Rotary International. As District Governor, he was fortunate to head a project that upgraded the medical equipment at Korlebu Hospital in Accra, Ghana.

COPD has personally impacted Dave and his family with the recent passing of his brother attributed to COPD and a second brother managing severe COPD.

When he's not working or working on behalf of others, Dave enjoys his time as an FAA private pilot and certified scuba diver and enjoys traveling with his wife of 25 years. Between them, they have a total of seven children and 13 grandchildren.

John Torrence (NV)plus

John has been self-employed in the construction, computer and textile industries for the last forty years. Until the pandemic, he had been running "A Stitch Above", a small embroidery shop that specialized in making custom display tablecloths and banners for colleges, government and military customers. Now it looks like retirement is his best option ahead!

John's greatest accomplishment in life is that he helped to develop and implement a truly effective poverty relief program in Mexico that is still active today, and can be found here:

John started coughing in 2009 and was first diagnosed with NTM and Bronchiectasis in 2012. His mom had both of these conditions a few years before he did, and sister and various cousins on his mom's side of the family have lung issues as well. He has had several infection and treatment cycles over the last nine years, including fifteen antibiotics and lung surgery.

John has written articles for the COPD Foundation about his personal journey with lung disease, and has worked with both National Jewish Health and Insmed providing the patient perspective.

When his lungs are healthy, John’s favorite activity is scuba diving. Other than that, he likes to build, diagnose, and fix anything from cabinets, appliances, cars, computers to toys. Along the way, John has left a trail of deconstructed items, but each time he gains a better idea of how to fix something in the future.