PHA National Call-In Day 2012

Congressional Staffers Inundated with Phone Calls for a Cure

Melanie KozakMelanie Kozak

PHers across the country called their Members of Congress during PHA National Call-In Day on April 26 to urge them to co-sponsor the Tom Lantos PH Research and Education Act of 2011. Thanks to everyone who called and made the day a resounding success!

After PHA National Call-In Day, Rep. Devin Nunes (R-CA) and Rep. Richard Neal (D-MA) agreed to co-sponsor our bill, the only PH-specific bill in Congress.

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

PHA has been following up with the Congressional offices you called during PHA National Call-In Day to ask them to co-sponsor the Tom Lantos PH Research and Education Act. Several members of the PH community have decided to follow up with their Members of Congress individually to continue to advocate for a cure. 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,” says Erica Huntzinger of California.
  • “Just wanted to let you know that both my mom and I called our representative and senators in South Carolina. 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,” reports Doug Taylor of South Carolina.
  • “I left word with the health legislative assistants for Senators Cornyn and Hutchinson and Representative Canseco. Since I am on a roll, I’m going to try to set up some meetings so that I can meet face-to-face and talk about our needs,” explains Sylvia Creach of Texas.

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

 

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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.