May 2, 2012 >> back to issue

PHA National Call-In Day Update: Congressional Staffers “Inundated” with Phone Calls for a Cure

Rino Aldrighetti and several medical professionals outside Senator Richard Burr's office on PHA’s National Call-In Day on April 26, 2012. PHA President Rino Aldrighetti (pictured far right) and several
medical professionals outside Sen. Richard Burr's office on
PHA’s National Call-In Day on April 26, 2012.

On April 26, 2012, PHers across the country spent the day calling their Members of Congress to urge them to co-sponsor the Tom Lantos PH Research and Education Act of 2011. PHA thanks everyone who called and made the day a resounding success! Several PHers reported back to PHA that the staffers had received a flood of calls urging them to support more PH research and education.

Help PHA Turn Your Phone Calls for a Cure into Co-sponsors!

In the coming weeks, PHA will follow up with the congressional offices you called during PHA’s National Call-In Day to ask them to cosponsor the PH Research and Education Act. Here are a few ways you can help us build momentum and continue advocating for a cure:

  1. Contact PHA! If you haven’t already, please let PHA know which senators and representatives you contacted during National Call-In Day. Email Advocacy@PHAssociation.org and include your name, the names of the Congressional offices you called, the names of the staffers you spoke with (if available) and their response.
  2. Follow up! Keep PH research and education on Congress’s radar. Consider contacting your Members of Congress in the next few weeks to urge them to co-sponsor the PH Research and Education Act. Several PHers have already expressed their intent to follow up. Here are just a few of their ideas:
  • “I will be following up with printed materials about the Lantos bill and probably a DVD we made about my mom.” - Erica Huntzinger, California
  • “Just wanted to let you know that both my mom and I called our representative and senators in South Carolina. A week from today I am going to drop off personal letters from my support group members asking the representative and senators to co-sponsor the Tom Lantos PH Research and Education Act.” - Doug Taylor, South Carolina
  • “I left word with the Health LAs for Senators Cornyn and Hutchinson and Representative Canseco. Since I am on a roll, I am going to commit to sending emails to my Members of Congress for the Conference Advocacy Challenge. I also want to try to set up some meetings so that I can meet face to face and talk about our needs.” - Sylvia Creach, Texas

If you’re interested in continuing to advocate to your Members of Congress, PHA has the resources you need. Contact Elisabeth at Advocacy@PHAssociation.org or 301-565-3004 x753 to learn more about the steps you can take to help get us closer to a cure!

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NORD

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.