Family wants to help others needing organ transplants

Art Nadler

Saturday, June 26, 1999 | 10:27 a.m.

Brenda and Richard Sinclair are hoping to make life a little easier on families with a member who needs an organ transplant.

They were strapped with the challenge of raising $465,000 in 1996 when their daughter, Crystal, needed a liver transplant. There were also expenses of trekking to UCLA for the initial operation and post-operative care, plus paying for housing and meals.

That's why the Sinclairs formed C.C.A.P. -- the initials of their three children -- a nonprofit organization to defray organ-transplant costs and lend moral support to families nationwide.

Crystal -- whose nickname is C.C. -- was two months shy of turning 4 when she underwent a liver transplant in 1996 after an ongoing battle with cystic fibrosis. The Sinclairs conducted fund-raisers, accepted financial support from 13 Catholic churches in Southern Nevada, enlisted fund-raising aid from the Clark County Fire Department and worked with various individuals to pay the bills.

Now they want to take this burden off the shoulders of families facing similar circumstances.

"It's the normal everyday things you forget about," Brenda Sinclair said. "You still have to find a way to pay the rent. We would help them do fund-raising. For 90 days, C.C.A.P. would absorb families' everyday living costs."

The Sinclairs said C.C.A.P., presently operating out of their home in northwest Las Vegas, would also provide nurses to help families navigate the medical jargon. And they would make sure people are placed on donor lists nationwide by having representatives do the traveling for them.

Currently, Richard Sinclair said, each state has its own donor list and enrollments are done in person. Most people can't afford to travel to many donor sites.

Ken Richardson, executive director of the Nevada Donor Network, said he thought the Sinclairs' proposal to help families was good-hearted, but that it was "overly ambitious." He said there would have to be tremendous amounts of money raised for a national organization and that there currently are some donor groups that help people financially and with administrative support.

These groups include:

American Organ Transplant Association, P.O. Box 277, Missouri City, TX 77459. It's a private, nonprofit organization that helps families with airfare, bus tickets and advice on fund-raising. No administrative fees are collected.

Children's Organ Transplant Association, 2501 COTA Drive, Bloomington, IN 47403. The nonprofit agency helps organize community fund-raising and helps with related expenses. The group also assists adults. No administrative fees are collected.

American Kidney Fund, 6110 Executive Blvd., Suite 1010, Rockville, MD 20852. This nonprofit health organization provides limited grants to dialysis patients, transplant recipients and donors to pay for health-related expenses, transportation and medications.

American Liver Foundation, 1425 Pompton Ave., Cedar Grove, NJ 07009. It provides fund-raising information and will act as a trustee for funds raised.

Organ Transplant Fund Inc., 1102 Brookfield Road, Suite 202, Memphis, TN 38119. It gives fund-raising advice and materials and makes sure funds are dispersed properly.

Claudia Swift, transplant coordinator at Sunrise Hospital, said the biggest expense for transplant patients is transportation and lodging. Many people don't have insurance or their insurance coverage is limited.

Swift also thinks that the Sinclairs' organization is similar to other groups currently helping transplant patients and their families.

But the determined couple remains undaunted in their pursuit of turning C.C.A.P. into a national force to help families deal with organ transplants.

"We are a family who's been there and lived through it," Brenda Sinclair said.

"Our daughter's liver transplant was a devastating shock," Richard Sinclair added. "It was something we couldn't fathom. We got a lot of emotional support at UCLA, but we got none of that here."