Baylie for Brains
A young girl faced with a rare brain disorder was disappointed when she discovered that the National Research Foundation didn’t fund research to find a cure for her ailment. Baylie Owen decided to take fundraising efforts in to her own hands by launching an Ecommerce site, and found a sympathetic hosting provider in Hostway.
Hostway and Baylie Help Fund Brain Abnormality Research One Bracelet at a Time
Handmade, glass bead bracelets are becoming the new symbol of strength and unity in the fight to cure a rare brain abnormality called Chiari Malformation. Baylie Owen, a 6-year-old with the disease and a tremendously large heart, is selling her bracelets on a Hostway-sponsored Web site to raise money for the University of Chicago Hospitals’ research fund to help find a cure for the rare diseases of Chiari and Psuedotumor Cerebri.
Baylie was diagnosed with Chiari Malformation in February 2000, and in June 2004, with Pseudotumor Cerebri or high intracranial pressure. She has undergone two brain surgeries since her diagnosis and travels regularly from her home in Houston, Texas to visit her neurosurgeon, Dr. Frim, at the University of Chicago Hospitals.
Given that the diseases are so rare, The National Research Foundation does not fund research for a cure. So Baylie and her friends at the Ronald McDonald House turned their personal struggles into inspiration—they began fundraising efforts for research organizations that are working to cure Chiari, such as the American Syringomyelia Alliance Project (ASAP) and the University of Chicago Hospitals.
Fueled by her desire to make a significant contribution to the research, Baylie and her mother, Tressie, launched www.baylieforbrains.com in April 2005 to sell her handmade bracelets and keep friends and family updated about Baylie’s progress. With the help of her entire neighborhood, family and Girl Scout troop at bead-making parties, Baylie had already raised $28,000 in the first six months of selling.
Unexpectedly, the Web host for www.baylieforbrains.com stopped providing them free hosting. Once Hostway learned about Baylie’s story in the Chicago Sun Times, the company happily offered its reliable hosting services, ensuring Baylie didn’t miss any bracelet orders or donations.
“We were just planning on switching hosting providers due to an unforeseen cancellation, so the offer of free Web hosting from Hostway came at such a perfect time. We use the site to update our friends and families about Baylie and to sell bracelets, so it’s extremely important to have a provider we can trust,” said Tressie Owen.
“Hostway is proud to provide free hosting to Baylie’s ‘Bracelets for Brains’ site. Her story is an inspiration to everyone and we’re delighted to provide the platform for her fundraising efforts, as well as a venue that can unite this community in their efforts to find a cure,” said John Lee, Hostway’s vice president of marketing.
“Our purpose in selling these bracelets is twofold: To donate money for Chiari research and to raise awareness for the disease,” said Tressie Owen. “Baylie’s strength keeps me motivated every day and I can’t begin to express how proud I am of my daughter.”
Baylie’s motivation is “To make Chiari a household name one bracelet at a time.” It looks like she’s well on her way!
Download Baylie for Brains Case Study - Requires PDF
