APRIL 28, 1997
Berit Cooper, here with her father Kim, has been the reason for much hard work which has resulted in a worldwide sypmposium to be held at Chateau Ste. Michelle.
by Carrie Phelps
What began as a neighborhood Christmas tree lighting party last December in Katie and Steve Lundeen's front yard and a day later turned into a fundraising effort called "Buy a Light for Berit's Bright Future," has made a dream come true for Woodinville residents Kim and Laura Cooper and their young daughter Berit, who suffers from Alternating Hemiplegia of Childhood (AHC).
"The day after the tree lighting, Katie came up with the idea of continuing to raise money with the 'Buy a Light for Berit's Bright Future' campaign. There were 2,000 lights on our Christmas tree, so we decided to 'sell' a light for a $10 donation to the AHF," said Steve Lundeen.
"A flyer was put together with a picture of Berit and the lighted tree. Over 5,000 flyers were donated by LaValle Printing of Woodinville and then distributed to businesses throughout Woodinville, Redmond, Kirkland, and Bellevue," Lundeen added.
"We were gratified by the amount of donations we received. We raised about $10,000 from the 'Buy a Light' effort. It was truly a Godsend," said Katie Lundeen.
The family's hard work and fundraising efforts and the generosity of friends and neighbors have led to the first-ever medical symposium on the childhood disease. Chateau Ste. Michelle Winery will be the site for the event which will take place May 15-17. More than 20 doctors from the U.S., Canada, Europe, the Middle East, and Japan will be attending the event.
The symposium will be kicked off on Friday, May 16th, with an evening of wine tasting and food pairing as well as a silent auction. The public is invited to the event, which will be held in the Barrel Room at Chateau Ste. Michelle from 6:30 to 8:30 p.m. Admission will be $50 per person and all proceeds will go to the Alternating Hemiplegia Foundation. Reservations can be made by calling 486-3509.
Berit Cooper, the 19-month-old daughter of the Coopers, was diagnosed with this childhood disease in the fall of 1996. AHC is a rare disease with symptoms that usually begin during a child's first year of life. Without any signs that something is wrong, the infant or child begins to experience repeated periods of paralysis often accompanied with disturbances in eye movement.
Laura Cooper explained, "In October of 1996, I took Berit to Dr. Harry Chugani, Professor of Pediatrics, Neurology, and Radiology in Detroit, Michigan. After he tested Berit, and gave me a better understanding of what we needed to do to deal with this disease, I asked him if there was anything we could do to help in the fight against AHC. He told me that there needed to be a way for doctors from around the world to compare and share their cases and data on AHC. This is how the idea of the symposium began to take shape," Laura said.
"At that moment, we were off and running. We knew these brilliant minds had to be brought together if research and a cure was ever to be found for our daughter and the other 200 children worldwide who are afflicted by AHC," said Berit's father, Kim Cooper.
"This community, our friends, and family have rallied behind us. We've had an incredible experience with people guiding us and genuinely caring about Berit's health and happiness," said Laura Cooper.
Kim Cooper added, "Although many positive things will surely come from this symposium, the primary objective will be to discuss and to prioritize those areas where it is felt future research will most likely yield positive results. In this way, it will also help provide better direction as to where future research moneys might be spent," he said.
The Coopers will also host a gathering of over 30 parents whose children have been diagnosed with AHC during the symposium. They will discuss how they can better support each other and the medical community, how to best use technology to fight AHC, and how to support newly diagnosed families, and they will also brainstorm for future fundraising possibilities.
Anyone interested in learning more about AHC can find information on the Internet at http://www.worldnet.net/pjourda/. The web site was set up by Philippe Jourdain of France.