2013 Award Winner Profile

Jayna Wall 

Jayna Wall Lantos Project PosterJayna’s project helped her to educate her community with “the scoop on PH”. Before Jayna applied for the Lantos grant she had already planned on doing some fundraisers with a local ice cream store that has been supportive, and she got the idea of giving something out to raise awareness. Jayna decided to create ice cream scoops with information about PH and PHA to give out at her events. The ice cream scoops said: “Pulmonary hypertension is a rare disease with common symptoms like dizziness and breathlessness. Avoid misdiagnosis and get the "scoop" on PH”. 

Jayna held an event at her local ice cream store one weekend in July 2013 where they handed out the scoops along with information about PH. The event was held in honor of her son, Jackson Wall, and in memory of Ryan Roberts, a local boy who lost his battle to PH in July of 2012. The banana splits were in honor of Ryan, and customers received a free ice cream scoop with the purchase of a banana split, and the proceeds from all banana splits purchased that weekend benefitted the Robyn Barst Pediatric PH Research Fund. Jayna made bags with the scoop, PHA wallet cards, and brochures to give out, and when those ran out, she gave out scoops with the wallet cards attached. 

Jayna Wall Lantos Project There were scoops left over, so Jayna has been planning other events and giving them out there. Last fall, she hosted a “Fall PHun Festival” with games and activities for kids, vendors, wagon rides, a petting zoo, bouncy house, and live music! Admission was free but donations were collected for the Robyn Barst Pediatric PH Research Fund. They gave out the scoops as well as coozies and zebra stickers. The coozies said: “Are you breathless or dizzy upon standing, climbing stairs, straightening up from a bent position, or even while just sitting? You could have pulmonary hypertension (PH), a rare, chronic illness doctors often overlook. 

Jayna still has some scoops, coozies and stickers left, so she is currently working on planning a Spring Festival for April or May 2014 to continue spreading the word on PH to her community! 



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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.