PHA Pathlight Spring 2014 - (Page 31)

PHA CHAPter HAPPenings: new York & PHilAdelPHiA PHA 's New York Tri-State Chapter is now officially the Greater New York and Philadelphia Chapter. We are thrilled to celebrate our growth into the Philadelphia region with exciting upcoming events, including the inaugural Philadelphia O2 breathe walk taking place on Sunday, Sept. 7. To facilitate this growth, Marie Mascia-Rand has joined the PHA chapter team as Director of Community Engagement for the Greater Philadelphia Area. In this role, she will reach out to the community to encourage support of PHA's mission through fundraising events and increased awareness. In addition to being a seasoned fundraiser with more than a decade of experience in directing special events, Marie also has a personal connection to the disease. Her daughter Chloe was diagnosed with PH at 8 months old, and in 1994 Chloe was the first child with PH to survive a major heart surgery using prostacyclin in the early trial stages. Chloe passed in May 2006 at age 13 from complications after a tonsillectomy. Marie is eager to share her story and expertise with the community to raise funds and awareness to fight PH. You can read more about her story in the Persistent Voices section of this Pathlight on page 34. Visit for more information about events taking place in the Philadelphia and greater New York areas. For more information about the chapter, visit w ADVANCING THE CAUSE P H A N e w Yo r k Tr i - S t a t e C h a p t e r E x p a n d s i n t o P h i l a d e l p h i a J o i n U s f o r O 2 b r e a t h e Wa l k s i n N ew Yo r k a n d P h i l a d e l p h i a M ark your calendars for O2 breathe walks in New York City on June 1 and Philadelphia on Sept. 7. Last year's inaugural New York City event was a fun and meaningful day that raised funds and awareness to fight PH, and this year we are excited to expand into Philadelphia. The more people who join, the more funds and awareness we will raise. Register today and invite your family and friends to join you. You can walk for yourself, to show your support for a PH patient, in memory of someone who has passed or to honor all those who are fighting the battle against PH. Share your story and meet others in the PH community. Bring the whole family for food, music and kids' activities. Can't attend the event? You can still make a difference! Go to and join as a virtual walker. Check out our photos below to see all the excitement from the 2013 New York City walk. You won't want to miss it in 2014! w Joining the O2 breathe walks is simple! 1. Register! Go to and follow the simple instructions. It takes only a few minutes. Or you can call 646-568-2068. 2. Use PHA's tools to spread the word! Once you have registered, a web page will be created for you. Send the link to your email contacts and social media friends to share your story and raise awareness and donations to fund patient services and research for a cure to end PH. 3. Celebrate! Have fun at the event, and feel empowered by the hope for a cure that your efforts will provide. PATHLIGHT SPRING 2014 Patient-to-Patient Support Line: 1-800-748-7274 31

Table of Contents for the Digital Edition of PHA Pathlight Spring 2014

PHenomenal Lives
Coping with PH
Health Matters
Ask a PH Specialist
Helpful Hints
Research Corner
Advancing the Cause
Support Groups
Special Events
Chapter Happenings
Persistent Voices
Community Classroom
Conference Preview
PHenomenal Youth
Family PHocus

PHA Pathlight Spring 2014