Other PH News From Around The Web

11-Year-Old North Jersey Boy Inspires ‘Mobile Bakery’ Children’s Hospital Charity

April 4th, 2014: Family of a Mahwah boy with pulmonary hypertension kicked off a charity that they say will hopefully travel around the country giving cooking and baking lessons to kids in hospitals with life-threatening conditions. Read more here.

CrawPHish Festival organizers ‘fighting back’ against disease

“First-time symptoms of the disease always sounded the same: seemingly vibrant, healthy individuals experiencing shortness of breath, and later at risk of death from pulmonary hypertension.

Such was the case for a former chairman of the Woodlands Chamber of Commerce, Jack Stibbs. His daughter, Emily, then age 5, was seemingly a rambunctious, healthy little girl, when she arrived home one day complaining of shortness of breath. Drug breakthroughs in coping with the disease have allowed Emily, now 21, to continue to living through the pitfalls of the disease.” Read more here.

Alyssa’s Army still fighting

“Plattsmouth and area residents packed St. John the Baptist auditorium March 22 to help fund-raise for medical bills incurred by Alyssa Johnson.

The 15-year-old died in January after struggling with Idiopathic Pulmonary Hypertension, a rare lung disease.” Read more here.

Church to hold fundraiser for transplant candidate

“The First United Methodist Church in Mocksville will have a dinner at 5:30 tonight to raise money for a local woman in need of a double-lung transplant.

Karen Sykes of Mocksville learned last year that she has a rare form of pulmonary arterial hypertension, making it difficult to breathe. The only way to treat the illness is with a lung transplant, which would cost nearly $800,000.” Read more here.

 


A Conversation With Rare Disease Advocates