COPD360 Community Engagement Committee

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 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 certified as a Tobacco Treatment Specialist.

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 (Val) is currently the Executive Director of the Hawaii COPD Coalition, www.hawaiicopd.org, 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 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 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.