Taylor's Wish on ABC7

On Saturday June 2, the Third Taylor's Wish Race 2 Cure PH will take place in Tay's memory in Anaheim, California.  The event is organized by Taylor Caffrey's family and friends in her memory, raising funds for PH research and parient support programs.

The Caffrey family also does incredible work in building awareness of PH (as you can tell from the donated billboards that started popping up maround Los Angeles a few weeks ago). 

Recently, Steve and Lucas Van Wormer have been partnering with Tay's mom, Shari Caffrey in media efforts and this ABC7 news report is a spectacular result.



One of the exciting things about this news report, which also included Dr. Juan Alejos, is that ABC7 included a public service announcement (PSA) video that Steve and Lucas recently made using a Lantos grant from  PHA.  The station easily pulled it from YouTube.

We'll soon be adding Steve's video PSA's to our media page which already has his audio PSAs and to our media guide page.  As soon as we do, I'll be blogging about a story that Dr. Mike McGoon told me last week.  He used a free hour to get his local TV station to agree to air our new awareness PSAs.

Good luck to all the great folks who organize Taylor's Wish.  I know it will be a great day!

The amazing adventures of Steve and Lucas...

A few weeks ago, I wrote a blog titled Pediatric research: the power of one...and a half. It told the story of Steve Van Wormer and his ten year old son, Lucas and how they are building awareness of PH by creating public service announcements.

This is a story of people fighting to make things better; it's a story well worth updating.  Steve and Lucas are an inspiration to us all - showing us every day what’s possible when people decide to make a difference.

Here’s some of what’s been happening since my last blog…

Shortly after the first PSA was released, UCLA Health System issued a press release on the Van Wormer’s efforts.  This led to a number of stories, including blogs on emax Health News and The Baby Center.
Then came a surprise call from the actress Florence Henderson who Steve had worked with several years before.  She had been moved by Lucas’ story and offered her support.

There’s lots more in the works…but one more thing that should be mentioned now.  Steve was recently contacted by a voice over company.  They want to sign young Lucas to a contract!

Listen to Lucas and decide what you think?

This may turn out to be my most updated blog ever.  A few weeks ago Mollie Katz on our staff submitted Steve's PSA's for in WestGlen Communications 4th Annual Give Back Satellite Feed.  Today, (April 17), we got word that all four will be included in a satellite feed on April 19, where they will become available to over 1,000 TV stations!