Post-Transplant Life is Tough. But This Teen Feels Blessed
Diagnosed with PH when she was born, Sarah Donoughue spent most of her life living with pediatric PH. In 2019, she received a double lung transplant. Read her story.
Anna Lindner: Challenges and Benefits to Growing Up With PH
Anna Linder was diagnosed with PH when she was 17 years old. She wants PH patients of all ages to know that PH will not beat them. Read her story.
Riley’s Story
As a toddler, Riley Weigle was a healthy child. But at age 3, she was diagnosed with idiopathic pulmonary arterial hypertension. Read her story.
Rochester PH Community Launches Pediatric Support Group
The Rochester, N.Y., pulmonary hypertension (PH) community held the first meeting of its pediatric support group on Saturday, Aug. 24. Children with PH and their families were invited to join a painting studio and paint zebras on canvas. Jenn Garigen, Rochester support group leader, reports, “Our first pediatric support group meeting was a success!
On Grief and Giving Back
This article originally appeared in the June issue of Pathlight. Jackie Woosley is a Pulmonary Hypertension Association (PHA) support group leader who also facilitates the monthly PHA Bereavement Telephone Support Group. She was the caregiver for her adult daughter Karen, who passed away in 2016, and has taken on multiple volunteer roles with PHA to carry
Volunteer Spotlight: Iowa Support Group Learns About Palliative Care
Karen Fragale and Traci Stewart, Pulmonary Hypertension Association support group leaders of the Pulmonary Hypertension (PH) Iowa Support Group, hosted a meeting on palliative care on June 8. At the meeting, Jen Krier, a palliative care nurse from Mercy Clinic in Iowa, offered insights to the group about palliative care, including how palliative care
Volunteer Spotlight: Cardio Rehab Speaker and Therapy Pooch Present at Support Group Meeting
Nicole Creech, support group leader of the Pulmonary Hypertension Association (PHA) Lexington, Ky., support group, recently hosted a meeting on cardiopulmonary rehabilitation featuring speaker Katelyn King, MSEP, pulmonary rehabilitation coordinator at the University of Kentucky/Gill Heart & Vascular Institute in Lexington. Katelyn brought with her special guest Carmine the Therapy Dog whose owner is
PHA Launches Three New Facebook Groups to Support the PH Community
The Pulmonary Hypertension Association (PHA) has created three new Facebook groups to provide support for the pulmonary hypertension (PH) community! PHA’s Facebook groups provide members with a supportive space to share stories, updates, goals, worries and hopes, and ask questions and affirm others on their PH journeys. Members can share this information with others
Learning to Live Your Best Life with PH: Join PHA on the Road in 2019
The Pulmonary Hypertension Association (PHA) is excited to announce dates and cities for two PHA on the Road: PH Patients and Families Education Forums in 2019. PHA on the Road, a program of the PHA Community PH Education Fund,* is a unique opportunity for individuals with pulmonary hypertension (PH) and their families to
NORD Launches Caregiver Relief Program
Caregivers who help individuals with rare diseases are often unpaid family members who rarely get a day off. In recognition of the significant time, attention, patience and dedication that caring for a loved one with a rare disease demands, the National Organization for Rare Disorders (NORD) recently launched the Rare Caregiver Respite Program. Designed