April 20, 2007

Local families raise funds to support Juvenile Rheumatoid Arthritis research

Former playgroup holds fundraiser at Silver Creek Sportsplex; plan May 5 Arthritis Walk

By Carol Rosen
Staff Writer

Nine years ago, five mothers of six-month-old babies met at the Good Samaritan Hospital Mother’s Group.

When their children got too old for Good Sam, the five moms decided to move the group to River Glen Park. Seven children later, the five San Jose area families and their 12 children all remain close friends, and with good reason.

Several times a year, these families get together to raise money for the Juvenile Rheumatoid Arthritis Foundation (JRAF), since one of their members, Lindsey Fredericks, was diagnosed with the disease.

This is the third year that the playgroup – called Lindsey’s Playgroup Pals – has been participating and helping to raise money for the foundation. Before Lindsey was diagnosed—at age 3—it was just a playgroup. While the members were close at that time, they are even closer now.

Lauren and Lindsey Fredericks wear sign boards to promote the fundraising event.

“All our oldest children are a few months apart,” said Britt Dal Canto, this year’s team captain of the walk. “It’s a special relationship and so wonderful for the kids. They all get along so well, it’s just amazing.”

This year’s fundraisers so far have included a garage sale, with just the moms, and an April 14 fundraiser at the Silver Creek Sportsplex that involved the families and the kids. Nine-year-old Giovanni Dal Canto plays roller hockey at Rollin’ Ice and his parents—Britt and Tony—asked if the group could hold a fundraiser. The sportsplex opened its doors to the group, donating space and allowing them to raise more than $800 by selling Starbucks Coffee and Krispy Krème Donuts as well as eight different themed baskets filled with items donated by local merchants.

Rollin’ Ice, which is part of the complex, also donated two $175 youth league fees. Other donors included Hardtke World of Baseball in Campbell, Play Your Sport and Just Soccer, San Disk—which donated $500 worth of merchandise – Charlie’s Cheesecake Works donated two gift certificates, Safeway on Hamilton in Willow Glen provided a $20 gift certificate and Double D’s Sports Grill in Los Gatos gave a $25 gift certificate.

So far the group has raised $6,400 this year, and will continue to spread awareness of the debilitating affliction with the upcoming May 5 Arthritis Walk that will be held at St. James Park in San Jose. The walk, one or three miles, will begin at 9 a.m. It’s a nationwide event designed to raise awareness and funds to fight arthritis. According to the Arthritis Foundation, there are 46 million Americans—men, women and children—who have been diagnosed with the disease. Proceeds from the event fund research, public health and public policy efforts to improve the lives of those suffering from the debilitating disease.

Lindsey’s mother, Kelley, explained that there are three types of juvenile rheumatoid arthritis – systemic, pauciarticular and polyarticular. Lindsey has systemic juvenile rheumatoid arthritis. Unlike osteoarthritis, which typically strikes older people, juvenile rheumatoid arthritis is an autoimmune disease that strikes children. Of the three types, systemic is the worst, striking the entire body and leaving the child very ill with various degrees of immobility, such as being unable to stand, walk or play. It also can affect the heart and lungs.

Lindsey’s first flare-up lasted two-and-a-half years and was first characterized by high-spiking fevers and a rash all over her body. Luckily, said Kelley, the family lives near Stanford University offering access to some of the best doctors and innovative treatments in the world.

During her flare-up, Lindsey sometimes took medications six times a day. In addition, she often had to get daily injections at home. She has had intervals lasting weeks and months when the arthritis in her knees, feet and ankles was so severe that she couldn’t stand, walk or play. She also had to undergo general anesthesia for a CAT scan and spend periods of time in the hospital undergoing tests.

“There are 300,000 children in America with the disease,” Kelley said. “It’s not a popular disease for doctors. It’s tough because there’s a severe shortage of pediatric rheumatologists in this country. The specialist at Stanford is very good.”

Her family, she adds, is very lucky because the disease, its prognosis and the medications are changing rapidly and there are no long-term studies on the medications.

“Ten to 20 years ago, she would have been dead by now. Back then all they could do was joint replacement surgery,” she said.

Lindsey has been in a period of remission for the past year-and-a-half. Typical remissions last about a year before the next flare-up hits, said Kelley. During her last flare-up, Lindsey had a moon face from the steroids and had not grown in height or weight during that duration. Since she entered remission, she has rebounded and now looks and acts like a normal 7-year-old, her mother added.

Lindsey Fredericks draws raffle tickets at the fundraiser. Fredericks was diagnosed with Juvenile Rheumatoid Arthritis at the age of 3.

“She’s having a ball now,” Kelley said. “She plays with her playgroup friends and her school friends and loves her older sister Lauren. Lindsey is very active, loves dogs and volleyball, and is particularly active in sports. …She’s full of spirit and personality, all of which was overshadowed by the disease when she was sick.”

No study has determined what causes the disease, although currently doctors and researchers think those who get it have a genetic predisposition to it that is triggered by a random virus, according to the Juvenile Rheumatoid Arthritis Foundation.

“There is still much that is unknown about the disease. There is no cure for any of the three types of Juvenile Rheumatoid Arthritis,” said Kelley.

Jeff and Kelley Fredericks live in Los Gatos and Lauren and Lindsey attend Blossom Hill Elementary School. The Dal Cantos, who live in Willow Glen, are parents of Giovanni, who is 9 and attends Booksin Elementary, Marco, who is 5 and goes to Willow Glen United Methodist Preschool, and Nikos who is 14 months.

Two families live in Almaden. Ellen and Doug Takeuchi are the parents of 9-year-old Matthew and 6-year-old Jillian, who both attend Williams Elementary. Bill and Rennise Gunter are the parents of 9-year-old Samantha and 8-year-old Cole who attend Graystone elementary, and Grace, who is 4. Jeff and Andera Burke live in the Cambrian area and are the parents of 9-year-old Mia, who attends Bagby Elementary, and Harrison, who is 4.

Both Kelley and Jeff Fredericks have become active in the Arthritis Foundation. Jeff serves on the board of directors and on an advocacy committee for the foundation as well as a counselor at arthritis camp. In September, for the second year in a row, he will spend eight days on the California Coast Classic bicycle ride from San Francisco to Los Angeles.

Kelley has served on the Juvenile Rheumatoid Arthritis task force for the past two years and was chair of the Arthritis Walk. This year she’s planning to be in the Honolulu Marathon.

To find out more about the May 5 walk and to register, visit www.arthritis.org.