Nov. 28, 2012 >> back to issue

Congressional Luncheon Reaches Legislators from Coast to Coast

PH patients and their caregivers from Virgina meet with Sen. Mark Warner's office

 “Together, we can make real progress in the fight against PH.” — Lori Harju, Legislative Director, Office of Congressman Kevin Brady

In 2012, PHA added a new twist to our annual Awareness Month Luncheon on Capitol Hill — we invited PH support group leaders from different regions of the country to come early for a training and stay for the Luncheon. As a result, this year’s event boasted the most diverse group of PHers and their loved ones ever.

Luncheon attendees from the PH community mingled with legislative staff, sharing stories about life with PH and listening to remarks from leaders in the fight against the disease. Speakers included: 

  • Gary Gibbons, MD, the Director of the National Heart, Lung, and Blood Institute at NIH
  • Sen. Bob Casey (D-PA), the sponsor of PH-specific legislation in the Senate
  • Dr. John Berger, a PH-treating physician from Children’s National Medical Center-DC
  • Diane Ramirez, a PH patient and PHA Board Member.

Sen. Bob Casey (D-PA), the sponsor of PH-specific legislation in the Senate, spoke at the Congressional Luncheon“When you come here as advocates … You should never underestimate the value and impact of these visits,” Sen. Bob Casey told the crowd.

After lunch, more than 30 PH community members from 12 states met with legislative staff in their senators’ offices to request co-sponsorship of the Tom Lantos Pulmonary Hypertension Research and Education Act and support for the National Pediatric Research Networks Act

Not able to make it to Capitol Hill? You can be part of PHA’s grassroots advocacy network, the 435 Campaign, no matter where you live!

Let us know that you want to make a difference by educating your Members of Congress about PH. We’ll send you the resources you need to call, write or even visit your senators and representatives at their offices in your state. Contact Elisabeth to get started: or 301-565-3005 x753.


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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.