As Pulmonary Hypertension Awareness Month approaches, make sure you read the inspiring stories in the most recent issue of Pathlight magazine.
The fall 2021 issue features stories of people with PH whose self-advocacy paid off through diagnosis, treatment and care planning. Other articles focus on educating policymakers about PH.
In the cover story, Mike Naple of Washington, D.C., describes “Putting Advocacy Experience to Work for the PH Community.” Mike, who works in health care advocacy communications, was a congressional staffer when he was diagnosed with Group 3 PH.
In “Advocacy Through the Years,” Jack Stibbs shares how he connected with a member of Congress when his then 3-year-old daughter was newly diagnosed. Colleen Connor recalls the excitement and anxiety of traveling to D.C. for the first time to meet lawmakers and congressional staffers – and ultimately gaining a senator’s support for PH legislation. Joanne Sperando describes decades of experience speaking for the community in regulatory and legislative hearings.
The companion article, “Congressional Champions: Hooked by Patient and Caregiver Stories,” profiles five policymakers who have worked on behalf of the PH community.
In “Persistence Pays off With Diagnosis,” Dana Falk of Providence, Rhode Island, discusses the importance of self-advocacy after years of inconclusive tests and skeptical physicians.
Similarly, Lorraine Robbins of Warrington, Pennsylvania, describes speaking up for herself in “Find Your Perfect-Fit Doctor.”
These stories and other inspiring content are available only in Pathlight magazine, a benefit of your PHA membership. If you’re not a PHA member, join today to enjoy Pathlight, reduced PHA 2022 Conference rates and more. Choose the membership category that is best for you.
By joining at the Supporter, Leadership or Champion level, you support PHA’s patient programs, including PHA educational forums and support groups. To join by phone, call 301-565-3004 x810.