Osteogenesis imperfecta drive at state's Capitol(2)

Bill’s wife, Anastasia, said that among its activities, OI Foundation provides medical information to families and individuals, offers links to professional medical experts in treatment of OI, and fosters the creation of regional support groups across the United States. The foundation started its activities in 1970.

“If someone with OI does not know how to get help, or needs support in an array of social or individual issues, the employees and volunteers at the foundation can help,” said Anastasia. The foundation’s additional goals are to inform, and raise awareness about OI.

The OI Foundation provides at least $500,000 a year in research funds to scientists, medical professionals and educational and research programs to treat, and find a cure for the disease.

In addition, funds collected at the annual awareness walk support a regional grants program for individuals who need specially personalized items, such as electric wheelchairs, physical therapy machines, orthopedic devices, scooters, ramps, and special transportation. If an economic needs persist, medical expenses can also be funded through the foundation.

Robert Pankey, a 42-year-old father of a female toddler, who was also diagnosed with OI, said the event is needed to inform the society about the continuous need for funding, both public and private, to better understand how the genetic disorder evolves, and how it can be scientifically treated.

The foundation’s goal is to eventually find a cure.

Children from parents with OI have a 50% chance to be born with the condition. The older daughter from Bill, who is six, was born without OI. However, the younger daughter, who is four, was diagnosed with the condition.

“This walk is very good. The booths set here offer a lot of information, and people who don’t know how this condition evolves must know it,” said Pankey, who currently stays home to support her daughter, who is 20 months old. “People in our communities are beginning to learn about this condition.”

Donations of $50 or more were accepted, in exchange for an Osteogenesis imperfecta awareness T-shirt, magnets with paperclips, pens, pins, blue little flags, and other items. Regional support groups’ representatives collected several hundred dollars each from their members, and forwarded them to foundation organizers. At least one representative raised $500 from their support group.

In addition, Bill, who works full-time as operations manager at a Hewlett-Packard plant in Roseville, near San Francisco, said the website www.oif.org offers an array of support links, whereby parents with OI can find legal assistance about how parents with the condition are entitled to rear biological children. Links to support groups in northern and southern California, or groups composed of individuals with OI, their families and friends are also available.

“It’s important to get involved in this cause. Every individual, friend and relative who come to this walk helps us support this cause, and make us better people,” said Bill. “We will continue supporting these efforts.”