There've been lot of posts on acor this past week about "statistics" in relation to survival rates for NB kids. 30% this, 15% that, and everything in between. I think we (nb parents) all know that the stats are all make believe once your child recurs - there are no stats because so few children live and there's no rhyme or reason for why a few do live. A lot of parents agreed that there was only one stat: 100% or 0%. Your child will either live or die. And for a few days I agreed with that. But then I go back (as I do again and again) to all that I read in The James Emails and I think, "there's a lot of living that can be done between now and then, if then ever even comes." (Which, of course, it will for all of us.) So 100% or 0% is a stat for every person - everyday, don't you think?
Life and living is now. It's today. Life is making memories today that you can look back on tomorrow. Living is an adventure and everyday you have should be looked at with wonderment. Living isn't what's going to happen five years from now... it's what's happening now and we should all make the best of it no matter what hardships we have to bear.
That said, we're going to live 100% today and tomorrow and the day after that, and everyday day we can that follows.
Sunday, May 20, 2007
Wednesday, May 2, 2007
Where does your donation go?
This is a really interesting article that was written last year by the father of a little girl who had neuroblastoma. It's all about the distribution of funds/donations made by the American Cancer Society and how little they give to pediatric cancer research - not to mention that none of it goes to NB research.
I've been digging up facts again on NB. NB represents 8% of childhood cancers diagnosed each year. However, NB also accounts for 15% of childhood deaths caused by cancer. Thats a pretty big percentage for a disease that no one's willing to help fund research for.
Here's the acticle taken from Shelby Prescott's Caring Bridge page: http://www.caringbridge.org/ga/shelbyprescott/
The American Cancer Society’s (ACS) Relay for Life (RFL) is the world’s largest fund raising event in the world with some 4000 events in the US and many more in 7 other countries. More than 2.5 million Americans will participate in this event in honor or memory of a family member or friend affected by cancer. They will spend countless hours and donate over $400 million dollars with the expectation that their time and money will get us closer to a cure for cancer. But which cancers will benefit from that $400 million??
There are roughly 100 different types of cancer; each one using different drugs and treatments or different combinations of the same drugs and treatments. As with any other financial entity, the ACS budgets their income (donations) according to largest need down to the smallest need. There will be about 1.4 million adults diagnosed with cancer this year. In contrast, there will only be about 12,500 children diagnosed. Also like any other financial entity, the ACS and RFL look for creative ways to promote their cause in order to maximize the inflow of funds.
Gwinnett County boast the largest Relay for Life in the world; raising approximately $2 million dollars last year by about 10,000 participants. 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 kick off Pep rally with guest speakers, recording artist, testimonials, and all the fan fair. 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 - Nineteen children and one adult. Shelby was the youngest. Shelby was diagnosed with the childhood cancer, Neuroblastoma, on November 30, 2001. Only about 600 cases of Neuroblastoma are diagnosed each year. Half of these children will die within 5 years. Since Shelby participated in the Relay for Life, I have learned a lot about distribution of donations within the cancer world.
As I mentioned before, the ACS distributes their funds according to the greatest need or the greatest number of patients effected. According to the ACS’s funding chart for 2002-2003, $132 million was given to cancer research. Only $7 million was given to childhood cancer research. Total donations for the same time period was close to $1 billion. The other $868 million went to cancer awareness programs, group counseling, seminars, resource guides, and many other help programs, as well as fundraising efforts salaries and other executive 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 distribution of funds. If you had donated $100 to Relay for Life hoping to show your support for the honary chairpersons, $12.47 would have gone to research adult cancers while only 70cents 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 RFL’s group of Honorary chairpersons is made up of 95% children but only 0.70% (that’s right, less than 1%) of the donations will 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 ACS 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 5-10 years of testing to be FDA approved for adults, they had to go through another 5-10 years be retesting and re-approval for use in children. Not one drug that was used in Shelby’s treatment was designed specifically for Neuroblastoma….. or any other childhood cancers for that matter.
Here are a few of the many organizations that I would recommend: CURE Childhood Cancer; The Aflac Cancer and Blood Disorder Center at Children’s Healthcare of Atlanta; Cure Search/NCCFAngels in Atlanta; The Children’s Neuroblastoma Cancer Foundation; Alex’s Lemonade Stand Foundation; St. Jude’s Children’s Research Hospital. These organizations are strictly dedicated to Childhood Cancers and other life threatening diseases in Children.
You may think that I’m biased because I’m the parent of a child with cancer, but I also need to tell you that my wife was diagnosed with breast cancer in October of 2005 and her mother died of breast cancer 9 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.
Shelby Prescott was a kindergartener at Gwin Oaks Elementary School in Gwinnett. She died October 22, 2004. She was 2 months shy of her 6th birthday.
I've been digging up facts again on NB. NB represents 8% of childhood cancers diagnosed each year. However, NB also accounts for 15% of childhood deaths caused by cancer. Thats a pretty big percentage for a disease that no one's willing to help fund research for.
Here's the acticle taken from Shelby Prescott's Caring Bridge page: http://www.caringbridge.org/ga/shelbyprescott/
The American Cancer Society and Childhood Cancer Research Funding
The American Cancer Society’s (ACS) Relay for Life (RFL) is the world’s largest fund raising event in the world with some 4000 events in the US and many more in 7 other countries. More than 2.5 million Americans will participate in this event in honor or memory of a family member or friend affected by cancer. They will spend countless hours and donate over $400 million dollars with the expectation that their time and money will get us closer to a cure for cancer. But which cancers will benefit from that $400 million??
There are roughly 100 different types of cancer; each one using different drugs and treatments or different combinations of the same drugs and treatments. As with any other financial entity, the ACS budgets their income (donations) according to largest need down to the smallest need. There will be about 1.4 million adults diagnosed with cancer this year. In contrast, there will only be about 12,500 children diagnosed. Also like any other financial entity, the ACS and RFL look for creative ways to promote their cause in order to maximize the inflow of funds.
Gwinnett County boast the largest Relay for Life in the world; raising approximately $2 million dollars last year by about 10,000 participants. 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 kick off Pep rally with guest speakers, recording artist, testimonials, and all the fan fair. 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 - Nineteen children and one adult. Shelby was the youngest. Shelby was diagnosed with the childhood cancer, Neuroblastoma, on November 30, 2001. Only about 600 cases of Neuroblastoma are diagnosed each year. Half of these children will die within 5 years. Since Shelby participated in the Relay for Life, I have learned a lot about distribution of donations within the cancer world.
As I mentioned before, the ACS distributes their funds according to the greatest need or the greatest number of patients effected. According to the ACS’s funding chart for 2002-2003, $132 million was given to cancer research. Only $7 million was given to childhood cancer research. Total donations for the same time period was close to $1 billion. The other $868 million went to cancer awareness programs, group counseling, seminars, resource guides, and many other help programs, as well as fundraising efforts salaries and other executive 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 distribution of funds. If you had donated $100 to Relay for Life hoping to show your support for the honary chairpersons, $12.47 would have gone to research adult cancers while only 70cents 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 RFL’s group of Honorary chairpersons is made up of 95% children but only 0.70% (that’s right, less than 1%) of the donations will 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 ACS 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 5-10 years of testing to be FDA approved for adults, they had to go through another 5-10 years be retesting and re-approval for use in children. Not one drug that was used in Shelby’s treatment was designed specifically for Neuroblastoma….. or any other childhood cancers for that matter.
Here are a few of the many organizations that I would recommend: CURE Childhood Cancer; The Aflac Cancer and Blood Disorder Center at Children’s Healthcare of Atlanta; Cure Search/NCCFAngels in Atlanta; The Children’s Neuroblastoma Cancer Foundation; Alex’s Lemonade Stand Foundation; St. Jude’s Children’s Research Hospital. These organizations are strictly dedicated to Childhood Cancers and other life threatening diseases in Children.
You may think that I’m biased because I’m the parent of a child with cancer, but I also need to tell you that my wife was diagnosed with breast cancer in October of 2005 and her mother died of breast cancer 9 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.
Shelby Prescott was a kindergartener at Gwin Oaks Elementary School in Gwinnett. She died October 22, 2004. She was 2 months shy of her 6th birthday.
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