Starlight Starbright Children's Foundation CD-ROM: "Living with Kidney Disease"

The Starlight Starbright Children's Foundation has created a CD-ROM and Web site, titled "Living with Kidney Disease," for teenagers and children living with kidney disease. This multimedia program offers information on everything from medications, diet and dialysis to advice from peers and what to expect before and after a transplant. It can also be accessed online at www.starlight.org/kidneydisease.

Some of the features on the "Living with Kidney Disease" CD-ROM include:

Balancing Acts includes information on how the kidneys work and how medications keep kids healthy.

Dialyzing with Style features a discussion on the hemodialysis experience and how to perform dialysis at home.

The Road Ahead offers transplant wisdom from teens who have been there.

Ask Jim and Jenn delivers real advice from fellow patients on how to handle challenging situations.

The "Living with Kidney Disease" CD-ROM and Web site also contains information about blood tests, medical tests and other valuable material.

"Living with Kidney Disease", is a wonderful interactive program for the adolescent patient receiving dialysis. The educational and very entertaining approach that is used to address issues such as normal kidney function, peer relationships, diet and growth is sure to be enjoyed by all," said Bradley Warady, M.D., Director of Dialysis and Transplantation at Children's Mercy Hospital in Kansas City, MO, and a member of the Pediatric Urology and Nephrology Committee of the National Kidney Foundation.  Dr. Warady was the lead medical advisor for "Living With Kidney Disease."

The Starlight Starbright Children’s Foundation is a non-profit organization for more than two decades has dedicated itself to improving the quality of life for children with serious medical conditions by providing entertainment, education and family activities that help them cope with the pain, fear and isolation of prolonged illness.

Educational CD-ROMs, posters, and brochures on such topics as obesity, cystic fibrosis, sickle cell anemia, cancer, and other illnesses are also available from the Starlight Starbright Children’s Foundation. Starlight’s programs are provided free of charge to children and teens with serious illnesses and their families. 

To order program brochures, please call 1-800-315-2580, email programinfo@starlight.org or Starlight’s Web site at www.starlight.org.

This article was  updated July 2008.

Lauren's Hope Medical ID Bracelets

Over 16 million people in the United States are currently diagnosed with diabetes; millions more deal with kidney problems or heart disease.  Many of these patients are not wearing the medical identification they should because of the lack of fashionable choices.  A company called Lauren's Hope has developed a solution to this problem.

The Kansas City-based company offers dozens of interchangeable options that combine colored beads, with14kt gold-filled or sterling silver. The bracelets were designed to appeal to consumers of all ages.  They can assist emergency personnel in recognizing the patients' condition immediately.

Partners Denise Gaskill and Le Ann Carlson designed the bracelets after a request from the mother of a young girl with diabetes.

"I have a 13-year-old babysitter with diabetes. Her mother asked me if I could design a fashionable ID bracelet for her daughter. I came up with the idea of an interchangeable medical ID bracelet and it took off from there," Gaskill said.

Each bracelet contains two clasps that hook onto the medical ID tag. The bracelets are available in different sizes with several colors, including rose, cobalt and kiwi. Some of the bracelets may be personalized with a name. The prices begin at $39.95.

Carlson and Gaskill named the bracelets "Lauren's Hope For A Cure" because of their hope for an eventual cure to diabetes. In an effort to find a cure, Lauren's Hope donates a portion of its profits to the Juvenile Diabetes Research Foundation. For more information including pricing and selection, click here or call their toll free number 1-800-360-8680.

The ESRD Network Special Edition of the Adventure Park® Board Game

Over the past few years, past and present members of the Pediatric Subcommittee of The Renal Network's Patient Leadership Committee worked to develop a board game to provide pediatric renal patients with a fun and safe way to learn about end-stage renal disease (ESRD), explore what works for them and share their ideas and experiences.

After working with Cancervive, Inc, the makers of Adventure Park¨, the subcommittee developed the ESRD Special Edition Adventure Park¨ Board Game. This game includes a series of game cards related to ESRD that can be used with the existing game board and cards.

Kathi Niccum, EdD, Director of Patient Services at The Renal Network says the game looks more at feelings and psychosocial issues and allows kids to discuss their concerns in a sharing environment.

"One of the things that came up is an alternate way to talk to kids about kidney disease. It's a way to get kids to open up," said Niccum. "I've seen kids play with it and they have fun."

The game board itself is designed to look like an amusement park. Players move their game pieces over spaces and travel through six different attractions including: a magic show, the wild roller coaster ride, bumper cars, a haunted house, a fun house and a penny arcade. The cards were created to lead to discussions about coping with kidney disease and its treatments. Players collect tokens and the winner is the person with the most tokens at the end of the game. The game was designed for individual or group play. It is ideal for caregivers and hospital staff.

Only a limited number of this board game has been produced. For more information or to place an order, please call the Patient Line at 1-800-456-6919 or click here.

This article originally appeared in November 2001 aakpRENALIFE, Vol. 17, No. 3.

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