September 5, 2012 >> back to issue

PHers Make a Difference in their Congressional Districts this August, Drumming Up Support for the Tom Lantos PH Research and Education Act

Nicole Cooper

"People probably think, 'What difference can I make?' Listen, I'm one person. I've been in that congressional office and I've gotten a Member of Congress to co-sponsor after my meeting. If you get to one person, you make a difference."
— Nicole Cooper

August is one time during the year when Congress recesses for several weeks and Members of Congress travel back to their home states to meet with voters about the issues that matter to them. This year, PH community members jumped at this opportunity to educate their elected officials about pulmonary hypertension and the Tom Lantos Pulmonary Hypertension Research and Education Act.

One advocate, Yunena Morales, found a creative way to make a lasting impression during her meeting. She brought four support group members to meet Representative Adam Smith (D-WA) in his local office. “He asked a lot of questions, so I gave him a lot of information and an oxygen cannula. When I handed it to him he said, ‘I know what this is because I wore one in the hospital.’ Then he said that he didn’t need it. I told him to take and put it in his jacket pocket so that it would remind him to support the cause whenever he went to the House. He laughed — we all did!”

Whether on your own or with others, meeting with your elected officials to share your stories and explain our community’s needs makes a huge difference in the push to get more backers for the only PH-specific bill in Congress. You can bring along something to illustrate life with PH, as Yunena did, offer PHA literature, or find other ways to help Members of Congress remember and stand up for PH.

Make a Difference!

Share your story with your Members of Congress and urge them to co-sponsor the PH Research and Education Act. Scheduling and preparing for your visit has never been easier. PHA has several resources to help you:

Contact Elisabeth at 301-565-3004 x753 or for more resources or questions to help you with your district visits.

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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.