Tag: Relay for Life

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http://mindithemagnificent.posterous.com/

 

What YOU need to know about Childhood Cancer Research Funding. From the fabulous People Against Childhood Cancer (PAC2)

Mindi

~Momcologist

2010 Summary

So, where does the money go: Childhood Cancer Research Funding (2010) – People Against Childhood Cancer

Prior to Fathers Day 2007, I had not given much thought to how funding for cancer research worked. That all changed. I thought we would share some thoughts and observations based on my own experiences and our research. This only seeks to inform, raise questions and to provide a platform for discussion. Nowhere in here will we suggest what charity you should support. But, without the right amount of funds directed towards the right research, PAC2 will only continue to grow, and we really want to shut it down. Let’s just look at a few of the groups competing for your money.

Summary

  • HOSPITALS: it may be difficult to determine what percentage of a donation to a hospital would be directed towards research into childhood cancer. Donations may cover operating costs, research into other diseases, and/or childhood cancer research.
  • AMERICAN CANCER SOCIETY: In 2009 directed $0.007 (less than a penny) to childhood cancer research for every dollar of public support. (Total public support: $897,051,000 and total directed at childhood cancer research: $6,206,000. Source:ACS)
  • LEUKEMIA & LYMPHOMA SOCIETY: directed $0.02 to childhood cancer research for every dollar of public support. (Total public support: $287,625,000 and total directed at childhood cancer research: almost $6,000,000. Source LLS)
  • NATIONAL CANCER INSTITUTE: it’s your tax dollars at work. Over the past five years, it has directed between 3.6 and 4.0% of its total budget, an average of $176 million/year, to pediatric cancer. Why?


Hospitals

When a child is treated at a hospital, the hospital incurs costs and produces a bill for the treatment. The bill covers labor, drugs, supplies, new equipment, other operating costs and, if it has a facility, some is directed to research. Obviously not all hospitals have research labs, and the size and funding varies.

Many if not all hospitals have a fundraising arm. If you are at a facility that treats both adults and children, generally funds it collects support operating costs and additions the hospital may desire, and may go towards research. Research may be into treatment of any disease you can imagine. Some may go towards cancer research, both adult and childhood cancers. So, if you give to XXX Hospital, your money is directed towards many various causes, with an unknown portion related to childhood cancer research.

With hospitals, it would seem you need to ask if you can direct your donation to the cause you want to support.

Obviously, St. Jude is likely the hospital the majority of the public thinks of if and when they think of childhood cancer. Their marketing campaign is hugely successful. The post “What if….” has the actual data on St. Jude. In summary:

  • St. Jude treats less than 4% of all the kids with cancer.
  • St. Jude received $682 million in support (donations and bequest) and $82 million in grants from NCI, NIH, and, historically, organizations like CureSearch for Childhood Cancer, St. Baldrick’s Foundation, Alex’s Lemonade Stand Foundation and Rally Foundation for Childhood Cancer Research.
  • St. Jude spent $282 million on research on all diseases, 36% of support.
  • St. Jude fundraising expenses were $135 million. ALSAC admin and general costs were $51 million.

The American Cancer Society

The mission statement of the American Cancer Society (ACS) reads: “Founded in 1913, the American Cancer Society (ACS) is the nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. With more than two million volunteers nationwide, the American Cancer Society is one of the oldest and largest voluntary health agencies in the United States. Headquartered in Atlanta, Georgia, the ACS has state divisions and more than 3,400 local offices.”

Many chose to become involved with the ACS fundraising events, including the “Relay for Life”. The funds collected by the ACS are used for many causes. The numbers, in millions:

Childhood Cancer Research – $6.2

Other Research – $143

Prevention – $177

Detection/Treatment – $129

Patient Support – $275

Management – $63

Fundraising – $222

Looks black and white to us. The numbers speak for themselves with regard to the funding for childhood cancer, but just to be clear, 0.6% of funds are directed towards research to cure the entire suite of childhood cancers.
Imagine you participate in a Relay-For-Life. You raise $1,000. $270 (27%) goes to admin and fundraising costs. Only $150 goes to any research, and only $6 of that $1000 you raised is targeted towards childhood cancer.

The Stats
Overall, Charity Navigator gives ACS 3 of 4 stars but only 1 of 4 stars for efficiency. John Seffrin, Chief Executive Officer earns $685,884 or 0.06% of expenses. Program expenses (what it spends on the programs and services it exists to deliver) are 72%, management 6% and fundraising expenses 22%. Total revenue in 2009 was $897,051,000.

Questions

#1 -Are there ways to “direct” the money raised toward your cause? The ACS site provides the following options for “Donation Designation”; cancer research, breast cancer research, prostate cancer research, colorectal cancer research and lung cancer research. But is there a manner to direct your funds towards childhood cancer if your amount raised is significant?
#2 – Why, when less than 1% of the funds are directed at childhood cancer, do we see so many childhood cancer victims in the ACS literature?

(We know we’ll hear the “well research into adult cancers can benefit children” argument. Well, most adult cancers do not occur in children. And simple downsizing of adult doses is where we are at now, and the long term consequences have been demonstrated time and again and again and againto be simply unacceptable. We need targeted childhood cancer research!)

The Leukemia and Lymphoma Society

From its website: “The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The mission of LLS is to cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. Since its founding in 1949, LLS has invested more than $600 million for research specifically targeting blood cancers.”

We’re sure many of you have had excellent experiences with the LLS. Many chose to become involved with the LLS fundraising events, including the “Light the Night” and “Team in Training”. The funds collected by the LLS are used for many causes. The chart shows the various things supported (Year End 2009 data). The LLS has stated that almost $6 million of its $288 million in total public support is directed to childhood cancer. That equals $0.02 for every dollar of public support. The numbers, in millions:

Research – $69

Patient & Community Services – $92

Public Health Education – $43

Professional Education – $9

Management & General – $24

Fundraising – $45

Childhood Cancer – $6

So, you raise $1000 for LLS: $240 goes to LLS fundraising, general and management costs. $21 is directed to childhood cancer.

The Stats
Overall, Charity Navigator gives LLS 3 of 4 stars, and for fundraising efficiency, 2 of 4 stars. John Walter, the President, CEO earns $482,000 or 0.18% of expenses. Program expenses are 75%, admin 8% and fundraising expenses 18%. Total revenue last year was $277million.

Questions
#1 – Are there ways to “direct” the money raised toward your cause? I believe that national Light the Night teams raising over $100k may direct the funding? Anyone with experience?
#2 – As it is not readily apparent, has anyone seen the percentage of funds directed towards pediatric blood cancer research?

UPDATE – JULY 2009 – Here is a link to some information directly from LLS. Judge for yourself.

UPDATE – APRIL 2010 – We’re a little disturbed by LLS’s latest idea for fundraiser events. They’ve embarked on a Totally Baldacious campaign, where participants shave their heads. I know I’ve heard that one before….oh that’s right, St Baldricks has been doing that for many years solely in support of CHILDHOOD cancer research! Shame on you LLS…

UPDATE – AUGUST 2010 – from the LLS:

“LLS recently launched a research initiative focused on the long-term and late effects of today’s curative therapies – many of these quality-of-life limiting consequences impact pediatric patients differentially as children can live for decades after they are cured. LLS just committed more than $2 million to new projects in this research area, thanks to generous donors, and anticipate investing more than $5 million over the next 3 years, in order to make today’s cures safer.

We are also involved in the Alliance for Childhood Cancer –http://www.allianceforchildhoodcancer.org/acc/Main and the Pediatric Cancer Survivorship Legislation –http://www.capitolconnect.com/lls/contentpage.aspx?page=pediatricsurvivorship“

National Cancer Institute

The National Cancer Institute (NCI) is part of the National Institutes of Health (NIH), which is one of 11 agencies that compose the Department of Health and Human Services (HHS). The NCI, established under the National Cancer Institute Act of 1937, is the Federal Government’s principal agency for cancer research and training.

Here is the NCI total funding and the amount directed to childhood cancer over the past five years averages $176 million/year, and ranges between 3.6 and 4%. Over that same period, average NCI breast cancer funding was 24%, prostate 5% and lung 5%. During 2009 NCI did direct an additional $49 million in ARRA funds to support TARGET Research.

A portion of that NCI funding goes to the Children’s Oncology Group, through CureSearch – to the tune of $46 million for fiscal year ending Feb 2009. CureSearch then takes that funding and distributes it back to COG hospitals (more below).

Why is Federal funding for breast cancer five times the dollars per person life year lost when compared to childhood cancer funding? Why is Federal funding for prostate cancer, with a 99% five-year survival rate, nearly five times the total amount given to all types of childhood cancer? Why?

We challenge the entire paradigm of the NCI funding for cancer research. Have you ever known scientists who could manage? Think of cancer as a sinking ship, with all of us on-board. Who do we care for first? We get the women and children to safety. And we know many grieving Mom’s who would give up their seat to any child. But what we have is first class seating, funding, for adults.

And finally, consider this from our friends at KIDS V CANCER: “DID YOU KNOW? Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.”.

Susan G Komen

Just for comparison….Susan G. Komen for the Cure, formerly known as Susan G. Komen Breast Cancer Foundation, was established in 1982 by Nancy G. Brinker. Nancy promised her dying sister Susan that she would do everything in her power to end breast cancer forever. Today, Komen for the Cure is the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure, they have invested nearly $1 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.

Overall, Charity Navigator gives SGK 4 of 4 stars, same as last year. For fundraising efficiency, SGK receives 4 of 4 stars, same as last year. Hala G. Moddelmog, COO, earns $532,000 or 0.18% of expenses. Program expenses are 83%, admin 11% and fundraising expenses 7%. Total revenue last year was $299 million. Course…that’s before they started suing….

Childhood Cancer Research Focused Fundraising

The largest federally funded (mostly) organization is CureSearch. The CureSearch National Childhood Cancer Foundation is dedicated to raising private funds for childhood cancer research for the Children’s Oncology Group, the world’s largest cooperative cancer research organization. CureSearch Children’s Oncology Group is a network of 230 hospitals nationwide and more than 5,000 physicians, nurses, and scientists whose collaboration, research and care have turned childhood cancer from a virtually incurable disease to one with an overall 78% cure rate.

CureSearch/NCCF is the grantee for the Children’s Oncology Group from the National Cancer Institute. They receive funds from NCI and distribute them to more than 230 Children’s Oncology Group member institutions in North America and around the world in support of clinical trials. In addition, they raise private philanthropic and non-governmental funds, which they also use to support the Children’s Oncology Group.

For fiscal year ending Feb 2009, Charity Navigator gives CureSearch 4 of 4 stars. For efficiency, CureSearch receives 3 of 4 stars. Joseph Woelkers, Chairman, earns $287,00, or 0.49% of expenses. Gregroy H. Reaman, Executive Director, Scientific & Medical Affairs earns $391,000 or 0.67% of expenses. Program expenses are 95%, admin 3% and fundraising expenses 2%. Total revenue was $56 million. Revenue included $46.5 million from NCI and $13.3 million in donations, private grants and corporate grants.

Here is a map of COG hospitals, and a list of COG hospitals.

Obviously CureSearch is not the only childhood cancer charity. PAC2 has assembled a list of wonderful childhood cancer fundraising organizations here. Please consider CureSearch, St. Baldrick’s, Alex’s Lemonade Stands, The Rally Foundation for Childhood Cancer Research and all the wonderful other organizations fighting for our kids. Here’s some great groups you can contact right here at PAC2. These guys direct money only to childhood cancer related causes, primarily research. And you’ve seen the PAC2 chevron picture…Awareness –> Funding –> Research –> CURE! you know why funding and research is needed!

Speaking from the heart, over the past 2-3 years, PAC2 has come to know, respect and believe in the great people in these organizations. We believe that they will find a cure. And we know they will work with you in virtually any capacity and are ALWAYS looking for leaders and volunteers. They will work with you directly to meet your needs. The best part is that the VAST majority (typically 80 – 90%) of any money you raise for them is directed towards cutting-edge research into childhood cancer. Period.

If we expand into other childhood cancer charities, there are so many other worthy causes that may not be research oriented but still need support; local family support organizations, the Ronald McDonald House, SuperSibs, American Childhood Cancer Organization, Make-A-Wish etc, etc. Not to mention the parent led Foundations, who may contribute to support, hospitals, or other. All needing your dollar.

Other diseases, local police, the United Way, March of Dimes, Red Cross, Save the Whales, World Wildlife Foundation, you get the idea. There are over 900,000 registered with the IRS. It must be a pretty competitive business eh?

The nature of the business is that it is a business. And we as consumers should know where our donations are going. And expect accountability. Transparency. Just like this note is attempting to be. If we’re wrong somewhere….please let us know.

In the end, it’s your call. Decide if you want $4 (ACS) or $21 (LLS) or, typically $800 (CC orgs on our list) of the $1000 you raise to go to childhood cancer research.

Research is the key to a cure.

Big Disclaimer – our thoughts, experiences and analysis of their financial data. We just wanted to inform and show the differences, raise a few questions for the community, and to say things that we think need to be said. We are NOT saying ACS or LLS is not right, they just aren’t focused on childhood cancer.

Hell on Earth

Ronan. 3:15, I’m up. Wide awake. It’s now 3:45. I tried to go back to sleep. Didn’t work. I’m asleep on Liam’s top bunk bed. I fell asleep with Quinn up here. He is so cuddly. I think Liam is asleep with your daddy in our room. They were watching a movie tonight in there. Today was an o.k. day. Just o.k. I missed you a lot. Too much to do much of anything. So I didn’t. At one point, I saw Liam sitting outside on our porch swing, all by himself. I went out there to sit with him. He was sad and tried to hide his face as I saw the tears starting up. I asked him what was wrong. He told me he was just sad because he misses you. I put my arm around him and started to cry. I told him I was sorry. I told him that we tried everything to save you, but you were too sick. I told him I miss you too. Every second of the day. We talked about how boring the world is without you. There was nothing I could do in that moment to make him feel better. It broke my heart. The only thing that would make us better is for you to come back here. But we all know that is not happening.

The weekends are hard without you. On Friday, your daddy asked if I was excited for the weekend. I just looked at him and said, “No.” Why would I be? Excitement is something that I no longer feel for life. Life just is. As of now, it is empty and I am just thankful to pass the time. We had Kenny, Stacy and their kiddos over tonight for dinner. Right before they got here, I had Liam go out and get the mail. A big packet from Camelback Pediatrics came. I knew what it was, as I had Dr. Campbell to send it to me. It was a copy of your chart from their office. When I was there with your brothers the other day, as the two of us sat and cried about you, I asked her what they would do with your chart now. She said it was right there, still in with your brothers. I asked her to send me a copy so I could always have it. Tonight, as I opened it up my hands were shaking and I took a deep breath and flipped through it. I thought to myself…. there must be something in there, from when you were younger….. a sign that you had cancer. Nothing. A cough here and there, some red, gooey eyes a couple of times, you were exposed to strep. Nothing major. No abdominal pain, no pain in your joints, no discomfort walking or anything like that. I just don’t understand any of this. There was a letter to Dr. Eshun from the Dr. that did your radiology before you passed away. It said things like, “The patient appears skinny and has not eaten in 3 days, he is in a severe amount of pain……” Reading that, it was almost like I wasn’t even reading about you. This couldn’t possibly be about my healthy, perfect, baby boy. But it was. I winced out in pain from reading all of this as the thought of you in pain, is too much for me to handle. I remember though. Those last days where I think I rubbed your little leg for almost a week straight. The last few days, everywhere was hurting. I’m so sorry, Ronan. I’m so sorry for everything we tried to do to save you and it just wasn’t enough. I miss you so.

I’ve moved back into our room… clock is slowing ticking away. 4:45. I took Liam and walked him to the top bunk of his bed. “Thanks mom, I love you.” Words that are so sweet but also rip my heart out. Words that I know I’ll never hear from you again. I still cannot sleep and your daddy is so annoyed at me. He doesn’t get the whole not being able to sleep thing as he has no problems with sleep, whatsoever. He is so peaceful that I may roll over and punch him. His peacefulness is annoying me tonight. I want to be peaceful. I want to sleep without this Ambien. I want you back, Ro. So badly. I wonder if the whole not sleeping thing is something that happens to every mom that loses a child. I wonder if the dad’s are able to sleep fine. That would be interesting to find out.

My girlfriends from back home are walking in The Relay for Life tonight. I think they have been walking all evening and they won’t stop until tomorrow morning. They are doing it in Ronan’s honor. I wish I were there. They had purple tutu’s made and shirts that said, “Maya’s Mafia.” So cute. I am so appreciative of all of the love and support from back home. From everywhere. Thank you so much to all of you who worked so hard to make the event such a success. I just can’t believe we are doing it in his memory now, not his honor. That was hard for me to see. I think I may be sick.

Ro baby. Hi. That was from last night. UGH. I tried to be productive today. I really did. I got up, went out, ran some errands, and came home and hid in bed all day long. I didn’t get up again until we got ready to go over to your cousins for dinner. I only feel worse for having stayed in bed all day. It never makes me feel better but the thought of being out in the world, being productive, being present, was too much for me to deal with today. Your daddy woke up saying he had a nightmare last night. My response was, “How could your nightmare be any worse than our reality?” I know the logical answer to that, but it doesn’t seem to matter. It won’t make this pain any less.

I don’t know how you go on, existing in this world after losing a child. I guess it happens, because obviously people do it. And some even do it really well. I am going to try my best to find this out because I could easily see how this pain could take over your life and drown one in a darkness. It could happen very easily. I could see how one could just walk away from the life they are supposed to go back to living. The life of carpools, laughter, happy moms everywhere, cooking dinners, play dates, sunny skies, vacations, family game nights, and friends. It is so hard to be surrounded by happiness, everywhere, when you are constantly in pain and agony. It makes me want to run away and move to a place like, Port Moresby, which is known as Hell on Earth. It is a place for poor and hungry people, who sell their souls to the devil, who have nothing to give in exchange. Fine. That may be a little dramatic…. but existing in a world after losing a child, feels like Hell on Earth. And I don’t have to go all the way to New Guinea to find it.

I’m trying a new sleep medicine tonight. Restoril. I think Ambien was a bit too much for me. I don’t like the way it makes me feel. We shall see about this new one. I hate being on all of this shit. It is so not me. One day, I hope to go back to the way I was before this nightmare. A clean life without prescription meds. They scare me and I could see how a person could become addicted to them. It’s a slippery slope, my friends.

Alright, Ro. I’m going to try to get some rest. I miss you so much, little man. I hope you are safe. Sweet dreams.

xoxo