2011 Award Winner Profile

Steve Van Wormer

by Mollie Katz
PHA Vice President, Community Engagement

A Father and Son Team Up to Raise PH Awareness One PSA at a Time

Lucas Van WormerLucas Van Wormer reads the script for a PSA to raise
awareness about the need for research into pediatric PH.

Steve Van Wormer, a PHA Board member, has four very important things to communicate about PH, and none of them takes more than a minute. That’s because he has built these messages into four dynamic video public service announcements (PSAs) the length of most commercials.

With funding from a Tom Lantos Innovation in Community Service Award, Steve, who works in Hollywood’s television industry, wrote the scripts, assembled photos and worked with a professional designer to create additional images in PHA’s signature colors to make these messages fresh and distinctive.

Boosted by social media and public relations, these PSAs have been shared widely by Steve, by PHA and by others in the PH community. Through them, we have conveyed widely:

  • The need for more research into treatments of pediatric PH (voiced by Steve’s 10-year-old son Lucas, who has PH);
  • The importance of the Tom Lantos PH Research and Education Act in Congress;
  • An explanation of PH;
  • An introduction to PHA.

The project has been not only creative, but has gained wonderful exposure in diverse media. For instance, one or more of the PSAs have appeared:

  • On YouTube;
  • On the PHA website; 
  • On PHA’s Facebook page;
  • In email messages to our volunteer advocates to support National Call-In Day for the Tom Lantos Act in Congress;
  • On a satellite feed delivering all four messages to hundreds of local television stations, courtesy of West Glen Communications’ Nonprofit Give-Back program, offering free satellite time for selected PSAs;
  • In print and online news outlets around Los Angeles, boosted by a UCLA Health Sciences press release on Lucas, a UCLA patient, and his experience narrating the pediatric PSA. News organizations that told the story and featured the video included and The Burbank Times newspaper;
  • Embedded in two personal experience stories written by Marina Van Wormer, Steve’s wife and Lucas’s mom. These were posted on two websites for parents, and;
  • In social media messages sent by PHA Board members and others to their own contacts.
  • In addition, Lucas’s performance and the publicity around it led to a job offer to do more voice-over work in radio and television like his father. View all four PSAs

Opportunity in the Lantos Awards

This awareness-raising project is an example of how the Tom Lantos Awards can create opportunities for children and adults, patients and caregivers who have been touched by PH. The awards, funded by Gilead Sciences, provide monetary grants of up to $5,000 each for projects that benefit the PH community through approaches such as awareness-raising, advocacy and enhanced patient services. Recipients of these awards have done projects such as producing posters, holding educational retreats and preparing bags of small toys for children with PH.

The Lantos Awards selection process begins in the fall, when PHA begins calling for applications involving a written description of the project, its goal and its budget. A committee of PH community members reviews the applications during the winter and announces award recipients in the spring.


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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.