LOS ANGELES, Feb. 25, 2015 /PRNewswire/ -- If you haven't heard of pulmonary hypertension, one boy, his father and a local credit union want to change that. First Entertainment Credit Union, the entertainment industry, and celebrities Laura Dern, Courteney Cox, Florence Henderson and Jeffrey Hayzlett are rallying for the cause. Even NASDAQ gave a shoutout with a Tweet last week to its 388,000 followers.
Watch the videos and read the feature story on FirstenttheShow.com http://firstenttheshow.com/profiles/steve-and-lucas-van-wormer/
Meet 13-year-old Lucas Van Wormer, on a typical day he does voice overs for Cartoon Network and his father is a senior producer with FOX Sports, but outside the studio they have the not so glamorous job of fighting a rare disease: pulmonary hypertension.
Pulmonary hypertension is a rare, debilitating disease of the lungs that affects the functioning of the heart and can lead to heart failure. Without treatment, the average survival rate is less than three years. The problem doesn't stop at pulmonary hypertension: one in 10 Americans has a rare disease—nearly 30 million people—and two-thirds of these patients are children. For the 7,000 known rare diseases, there are only approximately 450 FDA-approved treatments.
With the help of his family's credit union, Hollywood, California-based First Entertainment Credit Union, the Van Wormers are on a mission to raise global PH awareness of pulmonary hypertension for Rare Disease Day® on February 28.
Lucas and Steve Van Wormer shared their story to raise awareness of pulmonary hypertension with a feature in the award-winning publication, the Show published by First Entertainment Credit Union, and a series of print and video interviews.
"We publish four times a year and each quarter the Show features a credit union member with a unique story to share. The latest issue features the Van Wormers and #PHAware is their story, we are happy to help tell it," said Roy MacKinnon, V.P. of Marketing.
The Story of Lucas
Lucas was born healthy and happy. When he turned four, however, things started to change.
"He was misdiagnosed with asthma, so for about nine months they put him on nebulizers, but nothing worked," Steve said. "After a pediatrician recognized an abnormality in Lucas' heart, the doctor diagnosed him with pulmonary hypertension, which massively decreases the amount of oxygen you can take in."
Lucas was given a life expectancy of two to three more years. A week later, at about four in the morning, Lucas was moaning and struggling.
"[Lucas was] saying that his chest hurt and that he couldn't breathe and that his heart was beating really fast," said Steve. "He ended up in an ambulance, sirens blaring, to UCLA, where they were able to stabilize him." That was over eight years ago, when there were few treatments for the disease, none of which were approved for children.
"It turns out that only weeks earlier, combination therapy to treat pulmonary hypertension had come into play. Lucas, in a very real way, became a test subject, and he responded beautifully," said Steve. "Although there are now 12 medications used to treat pulmonary hypertension in adults, none are FDA approved for children." Within just a few days of the combination therapy, Lucas was like a new boy. Later, after a month of trying to get approvals, Lucas' doctor UCLA's Dr. Juan Alejos, added a second drug and, again, Lucas responded beautifully.
"It changed everything," said Steve. "And he hasn't stopped since. It was phenomenal. I personally know a multitude of people—young and old—who have struggled to find the right drug or combination of drugs, but that wasn't the case with Lucas." Lucas is a rare exception of a PH patient thriving with this disease.
"My greatest wish is to find a cure for all the types of PH so no one young or old will have to go through life breathless," said Lucas Van Wormer
Help Make PH History. Become #PHAware. Your support can help bring this disease from Rare to Everywhere.
Download Steve's PHAware Mobile App, for iPhone/iPad and Android at: PHAware.mobapp.at.
For more information about Rare Disease Day, visit rarediseaseday.us. Follow the conversation on Twitter: #RareDiseaseDay2015.
For more information on pulmonary hypertension and how you can help, visit phaware.org.
About First Entertainment Credit Union
Founded in 1967, First Entertainment Credit Union is widely considered the premiere financial resource for those in the entertainment business with more than $1 billion in assets and serving approximately 70,000 members. First Entertainment in a not for profit, full service financial institution serving members through 10 branch locations in the Los Angeles area including three on Studio properties. For more information visit www.firstent.org
First Entertainment Credit Union
Roy MacKinnon - Vice President, Marketing
Steve Van Wormer
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SOURCE First Entertainment Credit Union