Collier Township resident Kelly Johnson has created a foundation to raise awareness and fund research for pediatric cancer.

Children's Hospital of Pittsburgh reports brain tumors are the leading cause of cancer-related deaths among children.

Unfortunately, her drive to find a cure comes from personal experience.

Her son, Sam, who was born with a genetic disorder, died from Medulloblastoma, a type of brain tumor known to be associated with the disorder, in November 2003.

"He was never able to walk or stand by himself and his speech was delayed," Kelly says.

"Sam was the happiest kid. He never cried about going to the hospital as long as he had what he wanted (which was TV, a radio, doughnuts or cookies). He had to put up with so much."

After he was diagnosed at 8 months old, Sam subsequently had surgery, multiple chemotherapy treatments and then finally radiation over the course of three years.

He endured constant treatments, testing and procedures.

Sam had multiple developmental delays because of his disease and treatment included both physical and occupational therapy, speech therapy and a hearing specialist every week.

His treatment was hard on the whole family including husband, Gary, and daughters Rachel, 9, and Carly, 7.

"We are fortunate that we are able to be strong for each other," Kelly says of her husband.

"My daughters will tell anyone who will listen about their brother. They think about him all of the time. They sleep with his stuffed animals."

Kelly officially started the Samuel J Foundation in Sam's memory.

"We spent a lot of time at Children's Hospital. After he died, I thought that I would try and do something to help those children going through the same experience," Kelly says.

The foundation is non-profit, and it supports pediatric brain tumor research, helps kids with cancer and supports the needs of kids with developmental disabilities.

"It's all volunteer. We have a Web site. Our mission is to promote awareness for pediatric cancer and brain tumors and raise money for research."

The foundation will sponsor Sam's Summer Splash, a fund-raiser for pediatric cancer, on Saturday, Aug. 13, at Scott Township Pool.

The event begins at 6:30 p.m. Tickets are $10, and kids under 3 are free.

Event-goers can enjoy a disc jockey, games, relay races and a Chinese auction complete with Steeler tickets.

"I don't ever mind talking about Sam or what we are trying to do because it is a healing process. To be able to do something helps me heal and be strong and keep going on," Kelly says.

Everybody involved in Samuel J Foundation has been more than happy to help.

Kelly's good friend, Devonne Weissert, started coming up with fund-raisers before the organization launched, and another dedicated friend, Gretchen Wolf, of Scott Township, is another part of the Johnsons' support system.

The foundation's first benefit in March 2005 raised more than $5,000, and Kelly says that she foresees that event becoming an annual one.

Sam's snack cart is one project the foundation helped create which is going to the neuro-oncology unit at Children's.

"When families are having a hard time, they don't have the time or the energy to take care of themselves. The snack cart is equipped with ready-to eat foods. Like potato chips, snacks and microwaveable foods," Kelly says.

"When you are at the hospital, it's one less thing to worry about. We buy the food ourselves."

Foundation members also purchased and donated decals to decorate the outpatient oncology area.

Again, it is her own personal experience that drives her to alleviate other families' pain.

Kelly will never forget an MRI on Nov. 4, 2003 that confirmed Sam's cancer was terminal.

"He just kind of looked at the doctor and rolled his eyes at her," Kelly says. "He didn't like any nonsense."

Sam was referred to hospice and given several prescriptions to address the increasingly terrible pain and other symptoms he was expected to experience in the coming weeks - as he faded away.

In his usual, willful, determined, defy-the-odds way as described by Kelly, Sam died just after 6 a.m. on Nov. 5, 2003, quickly and quietly, at home with his family.

"I wanted people to remember Sam and people to learn his story. I wanted to try to raise awareness. People don't hear about this kind of stuff - but it's out there. Parents are faced with some pretty horrible choices when their kids have cancer," Kelly says.

For more information on the upcoming fund-raiser at Scott pool, call Kelly at 412-855-6954 or reach her via e-mail at

Anyone wishing to make a donation can make checks payable to Samuel J Foundation, Donations can be sent to Samuel J Foundation, P.O. Box 75 Oakdale, PA15071.