As 2021 wraps up, the Pulmonary Hypertension Association reflects on our 30th anniversary and looks to the future.
This year, we celebrated the vision of four women who met around a kitchen table in 1991 to form what would become PHA. We marked PHA’s 30th anniversary by Lighting the Way Forward, sharing milestones, stories and visions for the future.
At the start of the year, we launched “30 Milestones in 30 Years,” an interactive timeline that details the shared history of PHA and the pulmonary hypertension (PH) community. Users can scroll through the timeline to discover the milestones and achievements that helped make PHA what it is today. In conjunction with the timeline, we shared a 30th anniversary milestone each week on social media from May to December.
We also shared the journeys of long-term PH patients on our website, newsletter and social media. Several of the featured patients were diagnosed in the 1980s and 1990s when there were limited resources and information about PH, such as patients Gwendolyn Brown, Alex Flipse and Diane Ramirez. We initially shared their accounts in the winter 2020 issue of Pathlight magazine, which launched our 30th anniversary celebrations.
That issue of Pathlight won a silver award in October from Association Trends, an organization for nonprofit associations. The Trendy awards recognize nonprofit organizations’ outstanding communications and marketing efforts. The issue included stories of the association’s early days, the journeys of long-time survivors, advances in PH research, and a tribute to founder Pat Paton, who died in July 2020.
This year’s PH Awareness Month theme was “Spark Awareness”, which complimented our “Lighting the Way Forward” anniversary campaign. In November, we brought back our award-winning awareness month calendar. Each day revealed an activity, fact or resource about PH to Spark Awareness. Every week, we also shared a 30th anniversary milestone in the calendar.
Throughout our anniversary year, PHA ran fundraising campaigns that featured the stories of three PH patients and a caregiver. The final campaign features caregiver Georgette Bridger and her husband Dean, who has PH and scleroderma.
The last day of PH Awareness Month was GivingTuesday, Nov. 30. In honor of PHA’s 30th anniversary, a group of generous donors matched gifts to PHA dollar for dollar up to $30,000. PHA raised a record $120,955 in donations.
When we announced our 30th anniversary plans at the end of PH Awareness Month 2020, we also asked the PH community to share their hopes, dreams and visions for the future. Throughout 2021, we continued to ask the community to share their vision on social media and our website. Here are some responses, edited for length and clarity:
“I hope readers will join me in honoring that legacy to continue Robyn’s work until children and their parents no longer know pulmonary arterial hypertension.” Greg Elliott, M.D., said of his late colleague, pediatric cardiologist and PH specialist Robyn J. Barst, M.D.
“That we continue growing as a group, continue spreading awareness of this disease and educating doctors. That we advocate for patients and find a cure!” – Lauren Thompson, Las Cruces, New Mexico
“My vision and hope is to become a motivational speaker and encourage others who have PH. I hope that one day they find a cure for this disease.” – Alberta Wright, Detroit
“That we can find a treatment that can reverse lung scarring. I also hope for 3D-printed organs … so that by the time I need my new lungs and heart, I don’t need to worry about immune suppression meds or a shortage of matching organs.” – Shavini Fernando, Arlington, Virginia
“My vision is a treatment ‘cocktail’ that will allow people with PH to hike, bike and swim just as well as those without PH. My personal hope is to be able to dance at my children’s weddings.” – B Davis Baltimore, Maryland
Thank you for Lighting the Way Forward with us this year and celebrating 30 years of PHA.