July 20, 2010 >> back to issue

Quiltwork of PHer Stories from Conference

Stu Berwick blogging at the PHA's BlogosPHere at ConferenceThe stories of our rich, diverse community shine through in this year’s Conference blog. Through their own words and experiences, our community members provide inspiration, support and invaluable information to each other. Here is just a taste of what you can find in the blog:

  • Stu Berwick (right), a PH patient and familiar face on PHA’s Facebook community, received enthusiastic greetings at Conference from PHriends he was meeting face-to-face for the first time.
  • Sally Maddox, a PH patient and PHA board member, volunteered at the registration desk and supported PH research in the research room by giving blood and getting an echocardiogram.
  • Pam Pedersen, mother of a PH patient, presented at two Skill Building Workshops and blogged about the importance of getting involved in the fight for a cure through one or more of PHA’s many programs.
  • Dana Osburn Albert, a PH patient, found Conference to be an eye-opening experience for her children, who finally realized what it meant for their mother to have PH. 
  • Gerardo Santos, a newly diagnosed PH patient, met other PH patients for the first time. He networked with medical professionals to learn as much as he could.
  • Debbie Castro, caregiver to sister Alex and PHA Volunteer Services Director, led a session where three patients discovered they lived within five miles of each other and will be starting a support group together.

Read more stories in the Conference blog | Submit your Conference story

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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.