MIFFLINBURG – A family that experienced the tragic loss of a child 25 years ago to cystic fibrosis is not over until they see a cure.
“Twenty-five years ago, I lost my son, Burke P. Derr, to cystic fibrosis (CF), but gained a teddy bear named Burke P. Bear,” Bob said. Derr, Burke’s father. “And I would give anything for him to come back without the bear, but that didn’t happen.”
Derr’s son died in 1997, two days before his 19th birthday. In 1985, the Derrs founded Pennsylvania Cystic Fibrosis, Inc. (PACFI) and after his son’s death, they were driven to “work even harder to help families in Pennsylvania affected by the disease and to raise funds for the research”.
A longtime teddy bear collector, Burke “especially favored the Boyds bears,” according to Derr. He said his son’s two best friends, Kelly Walter and Gretchen Robbins, knew and contacted Gary Lowenthal, president of the Boyds Collection. Walter and Robbins told Lowenthal that their friend, Burke, was an avid Boyd collector and didn’t have much time to live because of his CF. The two asked Lowenthal if he would name a bear after him.
“To their surprise, Lowenthal sent a letter thanking them for their letter and telling them that yes, he would gladly name a teddy bear, Burke P. Bear, after their friend. Burke’s friends had to show their letter from Lowenthal to Burke because he thought they were making fun of him,” Derr said.
Derr said Lowenthal had a member of his team deliver the first Burke P. Bear to a friend who then took the bear to the hospital where Burke was able to see his bear five days before he died.
“Burke was thrilled with his bear,” Derr said. “And he proudly showed it to all the staff at Evangelical Hospital and his visiting friends.”
Within weeks, PACFI launched the “Million Dollar Bear” campaign which aimed to raise $1 million from Burke P. Bear sales with donations from retailers and others who read the Burke story.
Boyds Collection made a significant donation to the campaign and within two months PACFI had Boyds Bears at retailers in 35 states, giving the organization $1 for every Burke P. Bear sold. A Massachusetts retailer suggested a “Burke’s Tour” where Burke P. Bear would visit each state and then other countries. Derr wrote a book called “Burke’s Tour”, published in 2007, with all proceeds going to the campaign.
Derr said that over the years there have been three brunette versions of Burke P. Bear and one blonde version.
Burke P. Bear was named “Pennsylvania Ambassador for Love, Peace, Fun and Cystic Fibrosis Healing” by the PA Legislature, was applauded in the Congressional Record, was named “Ambassador Globetrotter of Love” by a British publication, was hosted in Arizona by best-selling author Clive Cussler, and was titled “Very Important Bear” (VIB) by Emirates Airlines staff during his visit to Dubai, as he visited 36 countries.
The $1 million goal was achieved through bear sales, donations, fundraising and Derr said, “PACFI is proud to celebrate Burke P. Bear’s 25th anniversary in June of this year. PACFI would like to thank all PACFI members, volunteers, local businesses and individuals who donated to the campaign supporting the effort to make CF stand for ‘Cure Found’,” Derr added.
Recently, a group of British climbers took Burke P. Bear to Mount Everest Base Camp, 20,000 feet above sea level, 9,000 feet south of the mountain’s summit.
The Derrs were praised by former Pennsylvania Governor Tom Ridge for the work they were doing to fight cystic fibrosis. “It was interesting to hear Ridge tell us that ‘Not many people know this, but I have my own private collection of teddy bears and Burke P. Bear is going to join my collection.’ Who would have thought that the nation’s first Director of Homeland Security had his own collection of teddy bears?” Derr said.
PACFI is an independent, not-for-profit, all-volunteer organization dedicated to providing assistance to families of PAs affected by CF and funding CF research. Those who wish to donate can do so through the PACFI website at www.pacfi.org or by sending a check to PACFI, PO Box 29, Mifflinburg, PA, 17844.