My thoughts about the American Cancer Society

My thoughts about the American Cancer Society

 

So this is written out of frustration and sadness. These are MY thoughts.  If my view offends you, then I am sorry….I am speaking as an advocate for ALL our children. I DO CARE about every person affected by cancer, but our kids have no voice and sadly not many adults choose to speak on their behalf.

 

Recently there has been a lot of talk regarding the American Cancer Society and it’s lack of support of Childhood Cancer. There are days when I get angry and days when I think I should just stay out of this back and forth discussion with ACS which only leaves me with a nasty headache. I then tell myself I would be letting our kids down if I did not give my opinion and did not fight on their behalf.

 

So here are some of my reasons for being upset:

 

1) Relay For Life is a community event that raises money for ACS. Three years ago we raised $20,000 for Team Ishani. Later we realized that just 1% of that went towards childhood cancer (all types).  It made me sick. People donated their money in honor of my daughter and in support of childhood cancer and we had no say in where that money went. We asked if that money could go towards childhood cancer and we were told “NO”.

 

2) If anyone wants to donate specifically for childhood cancer, ovarian cancer, pancreatic cancer and many other cancers, they cannot. The only cancer types that you can restrict your donations to are, Breast, Colon, Lung, Prostate OR “research” for which they will determine where the money can be used (i.e it could all be used for any cancer they choose).  So we do not get a choice, even though we raise the money. Don’t get me wrong…….I will NEVER give ACS any money for childhood cancer…..I will direct it to a CC specific organization such as CureSearch, Alex’s lemonade Stand or St Baldricks. But I know many people who are unaware of this and with good intentions make donations to ACS. They do not know where their money is going. I know of many adults who have themselves fought cancer and still choose to donate to childhood cancer, because they cannot imagine ever having to watch their child fight cancer. I think ACS is afraid that if they have a donation tab for Childhood Cancer many donors would choose to donate to that cause. We have asked ACS many times why they have not got a donation tab for CC and their response always is “we have sent your request in for review”!

 

3) ACS considers childhood cancer as “exceedingly rare”. They do not think 12,500 kids being diagnosed each year and 300 kids dying each year and CC being the #1 killerdisease of children in the U.S being compelling enough to fight for them. However they have no problem in using our bald kid’s pictures or their stories to garner sympathy and money from their potential donors.

 

4) ACS is never consistent with their responses when asked about CC. They get very defensive and will never give any links to the studies they say they have funded.

 

5) In a recent conversation with a ACS employee, she asked me “how much do you think we should give for CC?”.  She continued to say “when YOUR child is sick, no amount of money will be enough”. She forgets that we are NOT fighting for our kid…we are fighting for yours. 

 

6) Many supporters of ACS do not want to hear what I have to say. Some probably think I do not care about adults with cancer. Actually I care very much. I have lost many friends and family to cancer. What they do not realize is that while they say “the next dollar may find the cure”, they forget that only 15% of all money raised goes towards  all research. The next dollar may be going to fund the CEO’s >1 million dollar salary! Most of these supporters have children. Do they not care about the fact that their kid could be diagnosed with cancer. Do they not realize that if they do not take a stand now it might be too late.  If you and your child had cancer and there was enough money to find a Cure for one of you, would you choose yourself over your child? Recently, the Susan.G. Komen Foundation reversed a controversial decision due to the outcry of people around the country. Do these  same people not want to also speak up for our children who do NOT have a voice? Are we as adults that selfish?

 

7) The ACS states “Out of a total of $105 million given in research grants in FY2011, about 8% of our FY 2011 funding was related to childhood cancer”. They say this in response to our comment about less than 1% going to childhood cancer. Well guess what……8% of 105 million in research of 1 billion earned per year IS less than 1% !! Do they think I am stupid?

 

8) ACS claims that they are the “sponsor of more birthdays”. I don’t know about you, but when I think of birthdays I think of children. Think of how many more birthdays we could have if there was better treatments for childhood cancer.

 

9) A famous quote you hear from ACS and their supporters, is that cancer research helps ALL cancers. This is SO untrue when it comes to kids. Children get cancers that are different to adult cancers. There are no known risk factors. You cannot just treat them like they are tiny adults. And if they still do not believe me, then I challenge them to research childhood cancers and use their data on adult patients!

 

So, for those of you who actually read my note…..

I will NEVER support ACS until they show more concern for our children and show that by increasing funding and awareness. I will not support Relay For Life nor be a part of it, until the children we relay in honor/memory of are given more respect and until those supporting it demand answers from ACS regarding their lack of support of our children. I will continue to educate people about ACS and their poor donor stewardship.

 

For those of you who think I am selfish by asking for more funding for children….

This will NOT help MY child. This will help those yet to be diagnosed. I am fighting forYOUR child because I saw what cancer did to my child and our family. When my daughter relapsed we were told there was no treatment protocol for relapsed Rhabdomyosarcoma. We were one of the lucky ones. I still have my child. Many do not. I want every child diagnosed with cancer to be given the “hope” of a Cure. While advances have been made in some childhood cancers, many types of childhood cancers still have extremely poor outcomes. There have been only 2 childhood cancer specific drugs manufactured in the past 2 decades. Our kids are given adult drugs which gives them severe side effects both short and long term. When we talk about childhood cancer, we lump them all together, unlike adult cancers which are talked about individually. ACS gives less than 1% to ALL childhood cancer research.

 

Our children have no voice. They cannot vote. But they do have dreams. If you don’t step up and speak up for them, if you don’t challenge the ACS and it’s intentions, then you have put yourself first and your kids last. They deserve more. I will fight for them. WILL YOU?

 

 

http://www.charitynavigator.org/index.cfm?bay=search.summary&or...

 

http://en.wikipedia.org/wiki/American_Cancer_Society

 

http://www.wsbtv.com/news/news/american-cancer-society-where-does-y...

 

http://curechildhoodcancer.ning.com/forum/topics/updated-lies-damne...

 

Dash Wallooppillai

(Mother to a 9 yr old who has fought Rhabdomyosarcoma twice since the age of 3)

 

 

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Comment by Team Scot Foundation on February 2, 2014 at 11:29am
Dash,

My 19 year old son was diagnosed with Rhabdomysarcoma in June 2012 and has relapsed just last month January 2014. I am scared to death of losing my child to this horrible disease and very disturbed by the research I have done on research for Children's Cancer. Here I thought ACS was helpful but am finding out not so much. I am starting my own foundation to help fund research strictly for Childhood Cancer in hopes of helping to find a cure so nobody has to go thru what we are with our children. No child should have to go thru this EVER! This article really helped me so I know who to give my money to in helping to find a cure. I would love to talk to you in more depth about what we can do to make changes at ACS and helping to get this message out. Please email me at teamscotfoundation@gmail.com.
Comment by Randall Hartman on April 3, 2012 at 7:39pm

I have serious issues with the ACS.   Sometimes I think they are just more concerned about raising money for their pet research buddies, than actually curing cancer.  Unlike the American Lung Association who actively campaigns against the causes of Lung Disease, like smoking and air pollution from industry and cars, the ACS totally ignores the causes of cancer from pollution, diet, and nuclear radiation.  They deny the fact that childhood leukemia rates are higher near nuclear power plants.  They deny the fact that cancer cells feed on sugar, and deny that diet has anything to do with cancer.  And they ridicule any non patentable methods of battling cancer, that have been positively verified to do good, instead of harm.   

Comment by Sean's mom on March 1, 2012 at 10:25am

Great job, Dash!!! You have been able to put into words all of the emotions I have been feeling since the uproar started and ACS got a taste of how angry families of childhood cancer patients are. I even messaged the cc dad who works for ACS - the one sent out a response to that first idiotic ACS post about the Barbies. He lives here in Atlanta and I truly thought I could connect with him after explaining how Sean was the 5th child diagnosed with cancer at his school within five years - in that gentleman's own backyard - but no message back! 

I, too, will never give to Relay for Life or any ACS fundraiser...until they get it ....and then give it to our kids!!!.

Comment by Dash Wallooppillai on February 25, 2012 at 6:04pm

Thanks Suzanne. Although ACS is a huge organization, I truly feel that together we can make them change their views and practices. It will take a lot of time and work and a huge amount of stress just dealing with them but we have to start somewhere. 

Comment by Suzanne Dahl-Crumpler on February 25, 2012 at 4:56pm

Well said Dash.  I could not agree more.  I have and will continue to address my similar concerns to ACS.  I will conitnue to donate my money and educate others to donate thier money to other organizations that are better stewards for childhood cancer. 

 

I also have been completely sickened by the recent discussions with ACS.  Not only do they not support childhood cancer - but thier recent dismissive and callaous interactions with with the childhood cancer community has in my opinion caused real emotional trauma to people who have already suffered enough.

suzy (mom of 5 year ALL survivor)

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