Laura D’Anna Spreads PH Awareness to Congress

Laura D'Anna, Immediate Past Chair of PHA's Board of Directors, and her children Aidan and Olivia raise PH awareness on Capitol HillLaura D'Anna, Immediate Past Chair of PHA's Board of Directors, and her
children Aidan and Olivia raise PH awareness on Capitol Hill

In April, Laura D'Anna, Immediate Past Chair of PHA's Board of Directors, came to Washington, D.C., to raise PH awareness and ask her senators and representative to co-sponsor the Tom Lantos PH Research and Education Act of 2011. We asked Laura a few questions about her experience on Capitol Hill.

What was the best part of your day on the Hill?

We were received warmly in each office, and I appreciated the opportunity to connect the importance of our bill to my personal story of losing my sister to PH and the stories of countless others who remain undiagnosed. I also really valued the opportunity to conduct these visits with my two children. It was their first time on the Hill, and sharing with them the importance of being an advocate for causes in which they believe was a truly memorable experience for me.

What tips do you have for PH advocates?

The most important thing is for advocates to tell their stories in their own words. Elected officials and staffers hear thousands of requests from their constituents annually, so in the few minutes we are with them, it is important to highlight why our request is critical. Our story is a compelling one given the complexity and severity of PH, the need for additional research, the requirements for specialized knowledge among medical providers, the fights to obtain an accurate diagnosis and appropriate care, all that has been accomplished through PHA, and the support we have at the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC).

And PHA makes it easy to do with a wealth of information and resources in the Advocacy Action Center Toolbox. The staff is also on hand to assist with in-person visits and letter-writing campaigns.

You’ve followed up with each of the offices since your visits. What has been the response?

I visited staff from the offices of Sen. Barbara Boxer (D-CA), Rep. Laura Richardson (D-CA) and Rep. Dana Rohrabacher (R-CA). We were not able to meet with staff from Sen. Dianne Feinstein’s office (D-CA), but we did leave a personalized letter and a stack of letters from PH community members. Since my visits, I sent follow-up notes to all of the staff with whom we met. I’ve already received confirmation from Rep. Richardson’s office that she will co-sponsor the bill, which was very exciting news. For me, it really demonstrated the importance of doing these visits! I’m continuing to follow up with Rep. Rohrabacher, Sen. Feinstein and Sen. Boxer by email. I’ve also sent them additional letters from their constituents so they know this issue is important to many PH community members in their respective districts.

Why do you think the PH community should advocate for the PH Research and Education Act?

This legislation will allow us to continue to receive critical support from the NIH to fund PH-specific research, and it will assure additional CDC-driven support for education for medical professionals and the public. Beyond the specifics contained in the bill, if passed, this legislation would significantly raise the awareness of PH within Congress and would then facilitate additional requests in the future.

In some ways, this process is a numbers game, and those who have the greatest number of constituents advocating for any particular issue typically gain the support of their legislator. Because PH affects relatively few Americans compared to other diseases, it is even more important that we have a good proportion of our community talking to their Congressional representatives.

Anything else you’d like to add?

We can move this legislation through, but we need your help! If you have already reached out to your Members of Congress, please do so again. I don’t think they can hear from us too often. Numbers matter and we are counting on you! PHA has several resources available to help you:

  • If this is your first time contacting your Members of Congress, please fill out a letter to your Members of Congress today. All you need to do is add your contact information and share your story!
  • Visit our Advocacy Action Center for specific tips on how to create an email request to set up an inperson visit with your senators or representative.
  • Contact us at 301-565-3004 x749 or Advocacy@PHAssociation.org to get more involved in educating your Members of Congress about the only PH-specific bill in Congress.

 

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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.