The Pulmonary Hypertension Association (PHA) formed an Advocacy Committee to advise and mentor people interested in advocating for the pulmonary hypertension (PH) community.
Each member of the Advocacy Committee will work with people from specific geographic regions. PHA is finalizing representatives for the Southwest, Mid-Atlantic and New York/New Jersey.
Learn about these committee members and which regions they represent:
Michelle Chance, M.S.N, APRN-BC
Michelle is a PH nurse practitioner at AdventHealth Orlando’s advanced lung disease program. Michelle wants to create greater awareness about PH and showcase the determination and strength of people with PH. Michelle says one of the most rewarding aspects of her PH experience has been watching patients regain their quality of life. She looks forward to continued growth as an advocate and health care provider.
Johnell DiWan, B.S.N., R.N.
Represents Pacific Northwest (Oregon and Washington)
Johnell, a pulmonary arterial hypertension (PAH) nurse since 2006, is the PAH nurse coordinator at Legacy Health in Portland, Oregon. A member of PHA since 2006, Johnell has attended many PHA conferences. Her favorite advocacy memory was lobbying for the Tom Lantos PH Research and Education Act at a PH Professional Network Symposium Advocacy Day.
Mark Dodson, M.D., Ph.D.
Represents Western Region (Alaska, Colorado, Hawaii, Idaho, Montana, Nevada, Utah, Wyoming)
Dr. Dodson became fascinated with PH when he was a medical student, which was about the time when effective PH therapies became available. He saw how medications improved patients’ quality of life and knew that he wanted to pursue a career in PH. Dr. Dodson is the medical director of the chronic thromboembolic pulmonary hypertension program at Intermountain Medical Center, a PHA-accredited PH Care Center in Murray, Utah.
Represents Plains Region (Iowa, Kansas, Missouri, Nebraska, North Dakota, South Dakota)
Karen, of Johnson, Iowa, was diagnosed with PH in 2010. She is a co-leader of the PHA Iowa Support Group, a PH advocate and volunteer for PHA’s patient support line. Karen connected with PHA after she was diagnosed when she was looking for a support group. About five years ago, she began sharing her story with senior staffers for her U.S. senators. Karen’s most memorable meeting was when staff from Sens. Joni Ernst and Charles Grassley staff agreed to meet for a joint meeting. Read more about Karen.
Represents Southeast (Alabama, Arkansas, Georgia, Kentucky, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee)
Diane Ramirez of Lexington, North Carolina, was diagnosed with PAH in 1987. A few years later, her younger brother and sister also were diagnosed. Losing family members to PAH motivated Diane to get involved with PHA.
Diane, a member of PHA’s Board of Trustees, has been involved with advocacy since 2006. Her goal is to help as many patients as possible. She has met with most of North Carolina’s congressional delegation in their district offices and in Washington, D.C. Diane believes advocacy is a platform for the PH community’s voices to be heard. She feels empowered to know people with PH can speak up and make a difference. She says PH patients must be tenacious to survive, which makes them powerful advocates. Read more about Diane.
Represents Great Lakes (Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin)
Holly, of Valparasio, Indiana, was diagnosed with PAH in 2018. By late 2020, she was so sick that she needed a double lung transplant, which she received on May 5, 2021, World PH Day.
Holly, a PHA support group leader, believes no one should have to fight for medication, procedures, surgeries or other health care needs. Quality care should be accessible and reasonably priced, says Holly, who has helped guide several people get help with health care challenges. Read more about Holly.
Mary Whittenhall, N.P.
Represents New England (Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont)
Mary, of North Attleboro, Mass., is program coordinator/nurse practitioner of the Rhode Island Hospital/Brown Medicine Pulmonary Hypertension Center, a PHA-accredited PH Care Center. Mary runs the patient support group affiliated with the center and educates her colleagues about PH. A member of PHPN since 2014, Mary says her favorite PHPN Symposium memories are associated with Advocacy Day.
Mary has advocated for her patients in many situations where their voices weren’t strong enough to be heard or they didn’t feel comfortable speaking up. She says she is encouraged by PH research and the incredible work by her colleagues to make a difference in the lives people with PH. Mary says she feels hopeful about advancements in understanding of PH to help patients to live better, longer lives.
Email PHA’s advocacy team to contact your regional Advocacy Committee representative. Or call 301-565-3004 x758.