Cure For Neuroblastoma

"Hope and inspiration in the smallest packages"

June 17th, 2007

A terrific article written by Bruce Prescott (Angel Shelby's dad) about the American Cancer Society's Relay for Life and childhood cancer research, was published last year in the Atlanta Journal Constitution. Something to consider if you want if you are planning to participate in Relay For Life this year in memory/honor of a child with cancer.

Here's the editoral:

Kids' cancer research merits more attention

Published on: 03/12/06

The American Cancer Society's Relay for Life is the world's largest fund-raising relay event, with more than 4,500 events in the United States and additional ones in other countries. In Georgia, there are more than 150 events. Gwinnett County's is the largest Relay for Life event in the world.

More than 3 million Americans will participate in relay events this year in honor or memory of a family member or friend affected by cancer. They will spend countless hours and donate more than $400 million with the expectation that their time and money will get us closer to a cure for cancer.

But which cancers will benefit from that money?

There are roughly 100 different types of cancer; each one takes different drugs and treatments or different combinations of the same drugs and treatments. As with any other financial entity, the American Cancer Society budgets its income (donations) according to the largest need down to the smallest need. There will be about 1.4 million
adults diagnosed with cancer this year. In contrast, there will be only about 12,500 children diagnosed. Also like any other financial entity, the American Cancer Society and Relay for Life look for creative ways to promote their cause in order to maximize the inflow of funds.

Gwinnett County raised nearly $2.3 million dollars in its relay last year, with 1,716 cancer survivors participating and 10,000 people taking part. The Gwinnett school system donates the most money — more than $1.1 million. Ninety-five percent of Gwinnett
schools participate.

To promote the relay, organizers search for "Honorary Chairpersons" — people who have
battled cancer and survived or are still battling cancer, but are survivors! The honorary chairpersons are presented at a large kickoff pep rally with guest speakers, recording artists, testimonials and all the fanfare. They're paraded across a stage for
all to see who we are fighting for. We want to help these people! At the 2003 relay, my 4-year-old daughter Shelby was an honorary chairperson. There were 20 that year — 19 children and one adult. Shelby was the youngest.

Shelby was diagnosed with the childhood cancer neuroblastoma on Nov. 30, 2001. Only about 600 cases (some reports say 1,000 or more) of neuroblastoma are diagnosed each year. Half of these children will die within five years. Since Shelby participated in the Relay for Life, I have learned a lot about the distribution of donations within the cancer world.

As I mentioned before, the cancer society distributes its funds according to the greatest need or the greatest number of patients affected. According to the society's funding chart for 2002- 2003, $132 million was given to cancer research — and only $7 million of that amount was given to childhood cancer research.

Donations for the same time period were nearly $1 billion. The other $868 million went to cancer awareness programs, group counseling, seminars, resource guides and many other help programs, as well as smaller amounts for fund-raising efforts, salaries and other administrative expenses. One side note: When we tried to get a brochure on programs for children diagnosed with cancer, there wasn't one.

Anyway, back to the distribution of funds. Based on the above breakdown, if you had donated $100 to Relay for Life hoping to show your support for the honorary chairpersons, $12.50 would have gone to research adult cancers, while only 70 cents would have gone to childhood cancer research. How much of that 70 cents would be for neuroblastoma research? None!

Let's look at this from another angle. Gwinnett Relay For Life's group of honorary chairpersons was 95 percent children, but only 0.70 percent (that's right, less than 1 percent) of the donations would go toward childhood cancer research.

I think there's something wrong with this picture. Don't you?

I'm not trying to get people to stop donating and participating in Relay for Life. The American Cancer Society does a lot of good for the adult world of cancer.

But if you see a bald child suffering from cancer and feel compelled to help cure childhood cancer, please research organizations that put children first and support those organizations.

When Shelby was first diagnosed, the drugs used in her protocol were all "hand-me-down" drugs developed and tested for adult cancers. Once they went through the five to 10 years of testing to be FDA-approved for adults, they had to go through another five to 10 years of retesting and reapproval for use in children. Not one drug that was used in Shelby's treatment was designed specifically for neuroblastoma — or any other childhood cancers. If childhood cancer is your priority, here are just five of the many organizations I would recommend:

• CURE Childhood Cancer
• The Aflac Cancer and Blood Disorder Center at Children's Healthcare of Atlanta
• CureSearch/National Childhood Cancer Foundation
• The Children's Neuroblastoma Cancer Foundation
• St. Jude Children's Research Hospital.

These organizations are strictly dedicated to childhood cancers and other life-threatening diseases in children.

You may think I'm biased because I'm the parent of a child with cancer. I also am the husband of a woman with cancer. My wife was diagnosed with breast cancer in October. Her mother died of breast cancer seven years ago. There is a huge need for funding in all areas of cancer research, but please take the time to pick the right organization to put your money into.

If it's breast cancer research or colon cancer research, by all means, get a team together and walk in the relay. But don't walk in memory or honor of a child. It will only be a waste of your time and resources.

• Bruce Prescott, his wife, Faith, and their son, Steven, live in the Snellville/Lilburn area. The family has lived in Gwinnett for 15 years. Mr. Prescott is a sales associate for a commercial cable TV equipment distributor and an active member of Smoke Rise Baptist Church in Stone Mountain. The Prescotts' daughter, Shelby, was a kindergartner at Gwin Oaks Elementary School. She died Oct. 22, 2004. She was two months shy of her sixth birthday.

May 10th, 2007

Ashleigh Marie Books!

This little angel fought neuroblastoma for two years. After her passing in March 2006, her parents established Ashleigh Marie's Books. The current childs book available is called Ashleigh's Fairies:

"This book demonstrates a child’s special openness to love that can come from things adults cannot readily explain. During the months prior to her passing in March 2006, Ashleigh spoke often about her fairy friends, inspiring this warm and touching story.

A portion of the proceeds from the sale of each book will be donated to the Children’s Neuroblastoma Cancer Foundation."

Check out the website and purchase a book to help other children with NB and to keep the memory alive of this sweet little girl.

Ashleigh Marie Books Website

 August 3rd, 2007

Greetings all! Today I have some news and an article for you to read.

The Lonliest Road Campaign is five fathers of NB patients biking across the country on a off the beat and path highway (hence the name). They are raising money to fund for 3F8's as well as media attention for NB. To learn more and to donate, visit the website.

Article: Late diagnosis blamed for lower child cancer survival rates in UK - Click here to read.