The Woodlands, TX - July 27, 2001 - Imagine going to your doctor's office with your young daughter who is experiencing shortness of breath, and leaving with a diagnoses of Pulmonary Hypertension - a rare and as of yet, incurable disease. "These two words changed our lives" said Marcia Stibbs, whose daughter Emily was diagnosed with PH four years ago, when she was just five years old. "I left the office wanting to know everything about the disease and how we were going to battle it," continued Jack Stibbs, Emily's dad.
The Stibbs found an organization that could help - The Pulmonary Hypertension Association (www.phassociation.org). The PHA is truly like an extended family. It is run by a network of volunteers, scattered across the country, who keep in touch by phone, newsletter, support groups, and the Internet. The Stibbs family became active members in the organization, have spearheaded fund raising events, and today Jack sits on their Board of Directors as Vice President of Advocacy. "You see, the good news is, we firmly believe that through intensive research, a cure for PH can be found, and Emily can lead a long and healthy life."
Jack's job in the organization is to help find individuals, companies and other organizations that are willing to get involved in a variety of ways to help find that cure. Jack needed a tool that could help him explain the disease to everyone from a Congressman to an elementary school child. He felt the best way to do this was to create a multimedia CD ROM guide, and use the incredible power of a personal computer to tell this story. To make this dream happen, he turned to an old friend and neighbor, Vic Cherubini, President of the epic software group in The Woodlands, Texas.
"I visited epic's new multimedia studio and was amazed at both the quality and quantity of information that could be placed on a CD-ROM. 3D animation, audio high quality video, photographs, web links, and hundreds of pages of helpful reference materials could easily fit on a single CD," said Stibbs. Stibbs and the epic team of artists, animators and programmers, then brainstormed on creating the "Encarta of Pulmonary Hypertension," just the kind of resource guide he would have found so helpful on the day he learned of Emily's diagnosis.
Work began in January of 2001 on collecting all of the information needed for the CD. "We wanted to include a number of video clips and full screen animations which could help tell our story" continued Stibbs. "We asked the talented professionals at Silver Rock Productions in Oak Ridge for their help in producing several video segments for the CD. Several touching vignettes were created by Director Mike Huffine including a poignant interview with US Congressman Kevin Brady who has spearheaded congressional support for PH research (Congressman Brady authored House Bill 1297 calling for $25 million in funding for PH research grants). A professional voice track was needed for the video, and local Voice Talent Dave De Hart of Voiceover USA gladly donated his services for the cause.
"Building this CD-ROM was a real challenge said Robert Bailey", the Project Manager at epic. Bailey collected bits and pieces (called "assets") from PH patients, pharmaceutical companies, television stations, and technical journals around the country. Bailey then had to convert them for use on the computer. "To watch all of these fine folks come together to produce this CD in less than six months was nothing short of amazing" said Stibbs.
Version 1.0 of the CD-ROM "Understanding Pulmonary Hypertension" in now being duplicated and will be available for distribution during PH Awareness Week - which is September 15 - 23 this year. The CD will be distributed free-of-charge to anyone who requests a copy from the PH Association (Phone - (301) 565-3004, email - .(JavaScript must be enabled to view this email address))
About the PH Association:
The Pulmonary Hypertension Association (PHA) is a non-profit organization dedicated to finding a cure for this rare and often misdiagnosed disease. The organization&rsqo;s objectives include Networking among Patients and Families, Patient Education, Public Education and Awareness, Patient Advocacy, and Fundraising. PHA - 850 Sligo Avenue, Suite 800 Silver Spring, MD 20907-8277. Office: (301) 565-3004, Fax: (301) 565-3994, .(JavaScript must be enabled to view this email address) (e-mail), www.phassociation.org (web site)
